Adherence to commercial food thickener used for treatment of oropharyngeal dysphagia in the community. A year follow-up.

doi:10.21203/rs.3.rs-1861490/v1

Download PDF

Research article

Adherence to commercial food thickener used for treatment of oropharyngeal dysphagia in the community. A year follow-up.

https://doi.org/10.21203/rs.3.rs-1861490/v1

This work is licensed under a CC BY 4.0 License

Journal Publication

published 16 Jan, 2024

Read the published version in BMC Geriatrics →

You are reading this latest preprint version

Rationale:

Commercial Thickener (CT) for OD treatment is often accompanied of dislike and poor compliance.

Aim

Describe adherence of CT in our population.

Methods

Cohort prospective observational study. Randomized patients from NDU-database(4 calls-interviews/year). Variables: age, diagnostic, gender, dwelling: Home (H)/Nursing Home (NH), viscosity (nectar: N, honey: HY, pudding: P), days with CT, questionnaire answers (good, moderate, poor): use (U), consumption patterns (CP) and implementation (I) and Hidratation (H). Change in patterns (improvement, maintenance worsening) and non-adherence reasons.

Results

204pts, 82.75 ± 11.49 years; 57.8% women. Dwelling: 43.6% H/56.4% NH. Days with CT 509 ± 475.28 [0-2762]d. Viscosity in 168 pts (82.5%): N 45.2%, HY 25% and P 29.8%. A global good adherence of 50%, moderate of 20.2% and poor 29.8%. Many changes occurred in distribution throughout the study period, stressing most of changes in the moderate group (worsening changes) and less in the poor group (mainly improvement). Those with good behaviour maintained their adherence in 61%. According to dwelling, there were changes in distribution (C1-C4): In U; 43.8% vs 41% in good, 37.5% vs 17% in poor, and moderate 18.8% vs 46.3%, p = 0.001. In CP: good 37.5% vs 54.5%, poor in 46.3% vs 28.4%, and moderate 16.2% vs 17%,p = 0.04. In I; maintenance of good in 55.4% vs 63.2% poor, moderate maintenance 9.5%, p = 0.001. Also changes according to H/NH in behaviour: U; 24.4% improved vs 17.6%, 17.8%, worsen vs 45.1%, p < 0.05. CP: 42.2% improved vs 29.4% (NS), 5.5% worsen vs 33.3% (NS). I: 31.1% improved vs 15.7%, 13% worsened vs 45.1%, p < 0.01.

Conclusions

This study emphasizes the clinical relevance of adherence to CT and the need of its long term follow up.

Dysphagia

adherence

compliance

persistence

commercial thickener

implementation

Population is ageing. Between 2020 and 2030 the percentage of the world's population over 60 years of age will increase by 34%, and could double by 2050 [1]. Accompanying old age may be swallowing disorders such as oropharyngeal dysphagia (OD), one of the lesser-known geriatric syndromes [2]. OD is associated with increased morbidity, mortality and higher hospital costs, affecting around 40% of people over 65 years of age [3]. Furthermore, its incidence increases in patients aged ≥ 80 years [4].

Institutionalization of the elderly is a global phenomenon and in the last decade the number of geriatric institutions in Spain has increased to 444.000 institutionalised people currently, 79% of whom are > 80 years [5]. Catalonia is one of the communities with the highest number of such institutions and our area of influence (Baix Llobregat) represents 10.61% of this [6]. In institutionalised people there are figures for prevalence of OD of between 30% [7] and 70% [8]. In our area of influence we conducted a study and found a prevalence of 30% in acute hospitalisation and 27% in long term socio-health care [9].

Treatment for OD is complex, requiring a combination of multidisciplinary approaches [10]. As part of the therapeutic strategy, commercial thickener (CT) is used to increase liquid viscosity as it decreases swallowing transit speed [11] [12]. This adaptation of fluids aims to preserve the oral route as much as possible, avoiding dehydration, malnutrition and the risk of aspiration secondary to OD [13]. Its use has been shown to reduce laryngeal vestibule penetrations and tracheo-bronchial aspirations [13][14][15]. However, there is a concern related with the dislike of thickened water which is possibly accompanied by poor compliance [16]. In relation to this, adherence to CT is a fundamental part of therapeutic intervention and has been identified as a problem in its management [10]. It has been demonstrated that noncompliance of instructions in OD is followed by adverse effects [17]. In the 1970s Haynes [18] described the terms of adherence and compliance which are used to study how well a person follows an indicated health or pharmacological treatment. Still there is no clear terminology around the subject and these terms are interspersed in definitions and in practice are interchangeable [19]. In general adherence is associated with greater patient involvement together with collaboration from the health care provider, and compliance is associated with more passive patient behaviour linked to health-related obedience [20]. There are even more terms added in this subject such as persistence, which is defined as the time the patient continues treatment [19], or implementation of treatment defined as the extent to which the actual guideline reported by the patient matches the prescribed one [20]. In the elderly population factors influencing adherence increase and medication use is not well described despite being a significant cause of morbidity [21]. Overall, there is found to be poor adherence, of 70% in preventive programmes and up to 50% in chronic treatments [22]. Adherence data in OD varies around 22–52% but studies are very heterogeneous [23][24].

CT is financed by the Spanish health system, and in Catalonia is dispensed by hospitals wherein each one specifies how it is managed. In ours is managed jointly by the Nutrition and Dietetics Unit (NDU) and the Pharmacy Service. We have found a perception of non-compliance for CT in our controls, and this gave us the initiative to study adherence to treatment. Since the role of CT in preventing complications is clear, and correct use and compliance is desirable, our aim of the study is to find out the adherence or compliance in the use of commercial thickener in our population and to identify reasons of not compliance. The results will allow better control and management of CT-regimen; identifying non-compliers, optimising delivering, and maybe the control of possible non-compliance would be optimised.

Study design

Cohort prospective observational study, from January 2018 to January 2019 following patients with CT treatment for OD whom were included in the Nutrition and Dietetics Unit (NDU) data base for home enteral nutrition management.

Study population

The sample was calculated based on an expected adherence of 50%[24][25], with 95% confidence and a precision of ± 7%. Based on these assumptions, a minimum sample of 196 individuals was estimated. Considering a 20% loss rate, the required sample was 250 individuals. From the total number of patients in our database, we randomly selected a sample of 258 patients, using a random number generator without repetition on line. We avoid choosing patients consecutively due to the risk of bias of any kind.

We set the inclusion/exclusion criteria as follows:

Inclusion criteria

Patients included in the NDU-database with specific treatment for OD with commercial thickener.
Signature of informed consent (patient or legal guardian).

Exclusion criteria

Patients who do not want more exhaustive control of the treatment but want the control carried out so far.
Patients who reject the artificial food thickener.
Non feasible telephone follow-up.
Discharges; cessation of treatment for improvement, transfers or referrals.

The study was approved by the Ethical Committee for Clinical Research of the Bellvitge University Hospital of Barcelona (December 2017) PR346/17 (CSI 17/51).

Procedure

CT Treatment:

Thickener treatment for OD is determined by the volume/viscosity (V/V) test which determines the safest and most effective volume and viscosity; nectar (N), honey (H) or pudding (P) [26]. Patients are identified with such treatment in hospital admissions, outpatient clinic, or in primary care. These patients are included in our NDU database and the product order (CT) is managed to be delivered directly to the patient's place of residence; home (H) or nursing home (NH). Ordinarily, Nursing homes had to contact UND via email every 3 months to make a formal request for CT delivery, indicating patient and dosage. At home, this request was made by telephoning each patient every 3 months. For the study a phone call was made in each situation (H/NH) and data was carefully registered, (in our department we registered deliveries sent that is number of CT cans that the patient received and when). Answers were checked by professionals of our department to contrast information given by patient with data registered.

At the time of the study the thickener available was starch-based. To cover patient’s needs deliveries were adjusted to liquid viscosity indicated. They were calculated on the basis of doses indicated by manufacturer (in this case Nutilis®), so that the consumption of cans over time is foreseen (Table 1). For delivery purposes we had to follow indications of manufacturers that is a minimum delivery of a box which contains 6 cans therefore, one box is delivered for nectar, and two for honey or pudding viscosities. When viscosity is unknown (because there is no indication) initially it is considered a pudding viscosity to ensure security. Later we attend patient’s/carer’s demands and adjust deliveries.

Table 1

Dosage of commercial thickener used (self-made according to manufacturer indications).
Dosage of commercial thickener (Nutilis®; available in cans of 300g). (Average liquid consumption of 5 glasses (200ml)/day (1l)). [Range of 3–8 glasses/d.]
Viscosity	Daily Average (day) consumption	Length/consumption (days) of pots
Nectar: 1 scoop = 4g = 2 dessert spoons (ds)	20 [12–32] g/d.	15 [10–25] d.
Honey: 1.5 scoop = 6g = 2.5 ds.	30[18–48]g/d.	10[7–17]d.
Pudding: 2 scoops = 8g = 4 ds.	40[24–64]g/d.	8[5–13]d.

Control-Calls

Within the year, a NDU dietitian made 4 calls, one every 3 months: Call1 at start (C1), Call 2 (C2) at 3rd month, Call 3 (C3) at 6th month, and Call 4 (C4) at 9th month to every patient and/or carers, with a total follow up of 9 months for each case. Data was collected in each call for study registration filling all parts of a questionnaire specially design for this study. The calls were made by the same UND dietitian to home and nursing homes, each lasting 10–20 minutes.

Adherence Study

Adherence is described by an international review for taxonomy as a conjunction of these terms:1-Initiation of the guideline, 2- Implementation and 3-Persistence [20]. Our study is based in this terminology with adaptation to analysis of the adherence of CT in a population with OD:

Initiation of treatment which is considered from data registered in the UND-database for each patient that is the data of initiation of CT.
Implementation defined as the extent to which the actual guideline reported by the patient matches the prescribed guideline. This has been assessed through a questionnaire that measures the adequacy of the use of the CT with respect to the indication established by the professional of NDU, the hydration (consumption of liquids) and finally checked with the consumption of CT registered in our data base.
Persistence defined as the time the patient is on treatment continuously [19]. This involves taking into account the term discontinuation of treatment which is the time the patient stops treatment [20]. In our study we have taken into account patient’s behaviour and we have counted the days they had been on treatment subtracting the estimated days without treatment (information referred by patients every three months).

Questionnaire

A questionnaire was developed to measure implementation of CT. The questionnaire was developed by dietitians from UND, main managers of thickener dispensing. Questions and their coding were checked by the rest of the professionals who are part of the Hospital dysphagia committee; otorhinolaryngology, rehabilitation, geriatric, neurology and digestive physicians, nurses and speech language therapist, also by staff from the pharmacy service and externally by a professional expert in dysphagia from another hospital.

Questionnaire development

The questionnaire is divided into three sections (Table 2). Section 1 was designed to assess the correct use of the commercial thickener (CT). It consists of 5 questions, four with dichotomous answers and one quantitative. It considers where the patient uses CT and follows the guidelines given by health professionals. Patients who did not have an indicated viscosity did not score unless they receive further advice of a health professional. Total score for this section runs from 0 to 4, where the highest score indicates good use, i.e. adherence to the indicated guideline; 3 is moderate use (use that need improvement as answers failed in some of the questions such as no using CT in all liquids or fail in the correct dosage). The range 0–2 reflects poor use, failing in both use in all liquids and dosage (0 being no use at all).

The second section assesses hydration by considering water intake and total fluid intake, as these will influence the overall assessment of use and consumption hence global adherence. There are variations in the general recommendations for water intake. For the elderly they have been estimated at 1.0-1.5 L/day-3 L/day [27]. Considering these recommendations in 200ml glasses would be equivalent to an intake of 5-7.5-15 glasses per day. We therefore consider an intake greater than or equal to 5 glasses/day to be correct. A low consumption of liquids is taken into account for the evaluation of the next section as it can justify a low consumption of CT.

The third section assesses CT consumption as an indicator that may or may not support compliance with the indications made by the health professional as assessed in previous sections. This section is very specific to each hospital as dispensing management of CT varies. Items are adapted to our internal CT management process. Answers were checked by professionals of our department to contrast information given by patient with data registered. We have divided the questionnaire according to the place of residence as the management of the thickener differs. We have developed different questions that support each other to compensate for any inconsistencies we may find between answers. At H, it is possible to obtain more accurate information of certain aspects. Firstly, patients were asked about how long a can of CT lasts once it’s opened. This is to check if it is consistent with the viscosity referred in section 1 following commands of manufacturer doses. The next item asked about the number of cans remaining at H, also to check if it is consistent again with the viscosity indicated or the viscosity realized. In this sense, the next question is to know if there may have been setbacks that have promoted the accumulation of cans (admissions, deliveries errors, low liquid consumption, etc.). Next question (#13) compares information given so far with previous orders (assessing when it was sent and whether the information matches). In this sense the accuracy in the next order is also counted, to compare the need with what is required (sometimes the patient does not want a dispatch despite the fact that theoretically it would be a call).

In nursing homes it is not possible to specify how long a can lasts or how many cans of thickener are left, because cans are dispensed more disorderly. Sometimes the cans are use individually in the NH, is, but in general one can may be is used for several patients, and the organisation of the logistics of the thickener canisters is different in each NH. Therefore the congruence in the orders made and the record of deliveries was compared. The questionnaire consists of 7 questions for home patients and 4 for residential patients. Most of the answers are dichotomous and each answer can have a value of "1" or “2” (favourable response) or "0" (unfavourable response). An inadequate consumption pattern was considered when the sum of the responses was < 3, a moderate pattern = 3 and an adequate pattern when ≥ 4. Within the responses, possible setbacks that may have modified the consumption of thickener (hospital admissions, dispatch errors, reduced fluid intake) were considered. Poor consumption was considered when the CT deliveries did not match with data described in section 1. Moderate consumption was established when it did match but with inconsistencies in some aspects and finally, a good consumption was when all aspects matched.

Implementation

To analyse patient’s behaviour of implementation of guidelines we have combined the results of section 1 and section 3 as follows (Table 3):

Good implementation:

-When CT use was good and consumption was good or moderate.

-When CT use was moderate and consumption was good, implementation was considered good.

Moderate implementation

-When CT use was good but consumption is poor.

-When use is moderate or poor consumption implementation kept moderate.

-When use is poor but there is a proper consumption (not common) it is considered moderate

Poor implementation

-When use is poor and consumption is moderate or poor.

-When use is moderate and consumption is poor.

We have checked for improvement or worsening of use, consumption and implementation between C1 and C4 according to the following criteria: Improvement, change from poor to moderate/good or moderate to good. Worsening was to change from good to moderate/poor or from moderate to poor.

Validation questionnaire

The readability of the questionnaire was initially assessed using INFLESZ, readability software in Spanish [28]. Specifically, section 1 (use) and section 2 (number of liquids) and section 3 (consumption) were subjected to a validation process. The content validity of these sections was determined using the Fehring Model [29]. This allows professional experts to assess whether each question is considered fit for purpose (representativeness for the CT adherence consultation) using a 5-point Likert scale; from strongly disagree (= 0) to strongly agree (= 1). The questions were scored with a simple sum or mean of the responses to the questionnaire ranked from 0 to 1 (0-0.25-0.5-0.75-1). The mean rating for each question, to be accepted as adequate, must be ≥ 0.8. A total of 15 professionals participated in this evaluation and the mean scores for the 6 questions ranged from 0.8 to 1 in all 3 sections. The information in section 3 is related to the functioning and organisation of our centre and is therefore very specific. For this reason, it was only decided to reach a consensus on its content among the UND professionals. No cross-checking was carried out as the answers were obviously going to be different, since the time elapsed influences consumption. Therefore, for sections 1 and 2, the questionnaire was tested for feasibility;. A group of 30 patients were tested for internal consistency using Cronbach's alpha, and a score of 0.73 was obtained. In the same group, a test-retest reliability analysis was performed by checking the responses of other dietitians in the team 15 days after they were first asked by another dietitian. The concordance analysis was measured with the Kappa test. The question "use of thickeners in all liquids" obtained a Kappa of 0.51 (moderate agreement) and the rest of the questions between 0.76 and 1 (good and very good agreement). The analysis of fluid intake between the answers of the first questionnaire and the next one was performed with Spearman's correlation test. The "number of glasses per day" obtained an r = 0.7 and the "number of glasses of other liquids" an r = 0.8 (both with p < 0.0001).

Variables

In C1, the following variables were included: Age, gender, diagnosis, highest educational level achieved (no formal education, primary, secondary or university education), person managing the thickener (patient, relatives or caregivers), dwelling; home (H) or nursing home (NH), days on CT (start of treatment in our centre), indicated regimen at the time of inclusion in treatment nectar (N), honey(HY), pudding (P), answers to questionnaire: use, hydration, consumption and implementation. In C2, C3 and C4, variables of change in patterns are added; Improvement, maintenance and deterioration of use, consumption and implementation .Finally reasons for non-adherence; dislike of CT, perception of improving in deglutition (patient or carer) and no specific reasons were recorded.

Statistics

We contrasted different dimensions established in our questionnaire to check adherence in our sample, we analysed patients with an indicated viscosity to check for a correct implementation. The comparison of qualitative variables has been carried out using the Chi-square test, and for the evolution of qualitative variables McNemar. Statistic has been calculated with Spss® programme (SPSS (IBM SPSS Statistics v 23).

Descriptive Data

Initially 258 patients were randomised from the UND database. From these, 54 were excluded: 81.5% were deceased, 13% transferred to other areas, 4% ended treatment and 2.5% were untraceable. In C1 there were 204 final patients whom main diagnostics were neurology 91.7%, respiratory 3.4%, oncology 2.5%, digestive 1% and other pathologies 1.5%. Days on thickener before the study were globally of 509 ± 475.28 [0-2762] days; at home 479.57 ± 473.45 days [0-2668] and in residence 531.78 ± 477.51 [0-2762], with no significant differences found between them. Half of the attended patients, 50.5% came from the hospital; 47.1% from ambulatory and 2.5% from other hospitals.

Educational level in the person managing the CT was not reflected in 6.9% of the sample. There was significant difference found in distribution of education level according to dwelling (p < 0.001): At home 16% had no formal studies vs 1% at NH, 37% primary studies vs 3% at NH, with secondary education 25% at H vs 11% at NH and 18% had university studies at H vs 77% of nursing staff at NH. There was also significant difference among managers of the thickener but this is mainly due to the fact that at NH most 97.4% are carers (2.6% relatives). At H it is the patient himself in 14.6%, relatives 64% and carers 21.4%; (p < 0.001).

A summary of descriptive data throughout the 4 calls can be seen in Table 4.

Use

Answers for CT use were studied in the whole sample although for the study purpose, we describe the main results on those patients whose viscosity was previously indicated by a health professional, that is 82.3% (n = 168), of total sample. In C1 42.3% used it properly, 31% could improve their use and 26.8% used badly. Use in successive calls is shown in Table 5.

When separating by dwelling in C1 we found significant differences in distribution at H (80 pts) vs NH (88 pts): at H poor use is made in 37.5% vs NH 17%, good 43.8% at H vs 41% at NH and moderate 18.8% at H vs 46.3% AT NH, (p = 0.001).

Table 5

General values in successive calls in patients with guidelines given.
		CALL 1 (168)	CALL 2 (136)	CALL 3 (120)	CALL 4 (96)
USE	Good Moderate Poor	42.3% (71) 31%(52) 26,8% (45)	44.9% (61) 20.6% (28) 34.6% (47)	49.2%(59) 17.5%(42) 33.3%(32)	41.7%(40) 6.3%(6) 52.1%(50)
HYDRATATION	Good Poor	71.48%(90) 28.6%(36)	65.5%(76) 34.5%(40)	72.1%(98) 27.9%(38)	71.6%(68) 28.4%(27)
CONSUMPTION	Good Regular Poor	46.4% (62) 16.7% (28) 36.9% (78)	56.6% (77) 12.5% (17) 30.9% (42)	45.8% (55) 21.7% (26) 32.5% (39)	55.2% (53) 16.7% (16) 28.1% (27)
IMPLEMENTATION	Good Regular Poor	50% (84) 20.2% (34) 29.8% (50)	40.4% (55) 27.2% (37) 32.4% (44)	48.3% (58) 14.2% (17) 37.5% (45)	55.2% (53) 6.3% (6) 38.5% (37)

Throughout the period of study we checked for any changes in the use of CT. We describe changes in the same patients between C1 and C4 in the whole period (Table 6). In C4 (last call), 64.6% maintained a good use although 35.4% worsened; 6% to moderate and 29.4% to poor use. Patients who used poorly at C1 maintained their poor use in 46.1%, among those 53.9% improved; 35% improved to a good use and 5% to a moderate use. Globally there was a worse shift to poor use in patients that used moderately which are the patients that changed the most. Changes in distribution between other calls can be seen in supplementary table S1.

When splitting the distribution and variations by dwelling we found different distribution at NH, where there is a significant maintenance of poor use 85.7%, 47.8% maintained good use. At H there is no significance but 80% maintained a good use. When comparing the changes, according to place of residence (from C1 to C4), 17.8% of patients at H worsen the use of thickener compared to 45.1% at NH, and on the other hand 24.4% improve the use at H compared to 17.6% at NH (p < 0.05).

We analysed the influence of the person that manages CT at home and we did not find any notable difference in any of the calls (at NH they were all professionals and we found comparison futile). We also did not find differences when analysing educational level.

Also we did not find significant differences according to the number of days patients were with CT before study. Good use average days; 549.11 ± 485.78d, moderate use; 448.50 ± 409.27d and bad use in 440.76 ± 465.43d.

Hydration

We obtained hydration data in 75% (126) of the studied sample (168). In C1 there was a mean consumption of total liquids of 5.61 ± 1.95 [1–8] glasses (gl) per day, with no differences in following calls (C2:6.36 ± 2.73; C3:6.29 ± 2.63; C4:5.42 ± 2.23). Analysing data in C1 and separating by type of dwelling there were no significant differences between them: At H consumption of total liquids was 5.42 ± 1.87 gl/d and 5.81 ± 2.03 gl/d at NH. Also there were no differences throughout the period studied (C2: 6.43 ± 2.59 H / 6.18 ± 2.66 NH; C3: 6.43 ± 2.59 H / 6.18 ± 2.67 NH; C4: 5.39 ± 2.39 H / 5.45 ± 2.10 NH).

If we only consider water consumption there was 61% (94) who did not consume enough water, but this is compensated for by the consumption of total liquids resulting into overall good hydration, i.e. with fluid consumption of more than 5 glasses per day, in 68.8% (106) and poor hydration in 31.2% (48). There are no remarkable changes in this consumption throughout calls (Table 5). Separating by place of residence, 68% (49) had good hydration at H and 69.5% at NH, no differences observed.

Consumption

In C1 analysing the sample with indicated viscosity consumption values are good in 46.4% (41), moderate in 16.7% (28) and bad consumption in 36.9% (78). In successive calls values are shown in Table 5. In C1, when separating by dwelling we found significant differences in distribution at H (80 pts) vs NH (88 pts): Bad consumption patterns were made in 46.3% (37) at H vs 28.4% (25) at NH, good 37.5% (30) at H vs 54.5% (48) at NH and moderate in 16.2% (H) vs 17% (NH) respectively (p = 0.044).

When we analysed overall changes in consumption patterns throughout the period of study we found no significant differences (comparison of C1 to C4 are showed in Table 7, for whole period comparisons refer to Table S2).

When comparing the changes, according to place of residence (from C1 to C4), no significant differences were observed. At H, 15.5% of patients worsen the use of thickener compared to 33.3% at NH, and 42.2% improved their consumption at H compared to 29.4% at NH.

Implementation

Once we have obtained data from the use and consumption, we combined results and obtained implementation of patients with initial indicated viscosities: In C1 50% showed a good implementation, 20.2% moderate and 29.8% had a poor implementation (Table 8). According to dwelling there are no significant differences in implementation: At H 48.7% vs NH 63.6% for good implementation; 33.8% at H vs 20.5% at NH for poor and 17.5% vs 15.9% for moderate implementation. Values in successive calls can be seen in Table 5.

Comparing C1 and C4: We observed differences in distribution (p = 0.001); 55.4% maintained good implementation at C4, although 37.5% moved to poor and 7.1% to moderate. Poor implementation in C4 is maintained in 63.2% and 36.8% turned to good implementation. Patients with moderate implementation shifted to good in 71.4% and towards poor in 19% (Table 8). This showed a global improvement of good implementation accompanied by a not-so-pronounced increase of poor implementation but also deterioration of those with moderate behaviour (Fig. 1). When splitting by dwelling there were significant changes in distribution from C1 to C4 at NH: 40.6% maintained a good implementation at H vs 37.5% at NH and 46.5% a poor one at H vs 62.5% at NH. (Changes during the whole period are shown at table S3).

Also when comparing the changes (C1-C4) in behaviour towards CT implementation considering the place of residence we found significant differences; at H 13.3% of patients worsen the implementation of thickener compared to 45.1% at NH, and on the other hand 31,1% improved at H compared to 15.7% at NH (p < 0.01).

Persistence

Patients from our sample maintained an average of 771.87 ± 501.52 [42-3097] days with CT. This sample showed a very good persistence of 89.7%, only 10.3% (21) of patients showed discontinuation process. From this 3.8% (8) kept discontinuation in the whole period.

Reasons for lack of adherence

There are 108 patients who give reasons of lack of adherence. The first one is dislike with CT in 59.4% (n = 63), secondly no specific reasons in 27.4% (n = 29) and patients or carers who feel objective improvement (with no professional counselling) 13.2% (n = 14). Again changes were seen when comparing C1 and C4, 55.4% maintained a good implementation

Our sample is geriatric, mostly women and institutionalised, predominantly with a chronic neurological disease. A proper guideline was indicated in 82.4% of the whole sample. This percentage is pleasantly greater than we expected, as it is often described that for OD no proper diagnosis and therefore treatment is associated [10]. Nectar was the most indicated viscosity which is good as clinicians are encouraged to prescribe the minimal level of thickness needed for swallowing safety [30]. A precise diagnosis with the minimum CT is best because intake of thickened liquids seems to be perceived as unpalatable, and patients prescribed overly thick liquids may show a lower compliance [16][31].

Adherence data on OD published in a last review (2018) ranges 21.9–51.9% but studies are very heterogeneous with different settings, pathologies, and different OD treatments [23]. Within adherence reviews there are many articles in head and neck cancer which has a different therapeutic component from neurological pathology. In this sense we have not compared to these rates because cancer population features are unique and cannot be easily generalised to other dysphagia-related conditions [10]. Neither is it possible to compare with hospital studies where adherence varies from 45% [32] or 48% [24] in acute wards which raises to 64 to 88% in specialized wards of same studies [32] [24]. In outpatient, we have found studies with compliance rates as low as 35.6%[33], to 76%[17] but the boundaries of the definition of compliance are unclear and some are retrospective studies. From all the papers, two, Shim's study [25] and a Spanish thesis [32] on adhesion are the most specific data on CT to compare with our work. The former reflects an overall adherence in liquid texturisation of 56.5% in 62 patients, but in reality adherence referred to the outpatient sample is 40.5% (42 patients),although it does not specified the guideline followed just the use [25]. We compare these data then with the figures of use (section 1), referred to as preliminary adherence which and they are in line with the 42% we found at baseline, a figure that is maintained over the 9 months. The thesis studied 143 patients with OD and CT treatment who are followed up for 18 months, 88% adhesion to CT is found in admission (with highly motivated staff) and at 18 months 45.5% [32]. In this thesis they enquire about the guidelines differentiating in the same textures as us (N, HY and P), and comparison are more appropriate to our findings. We obtained a good adherence of 50% in call 1 with the lowest level of 40.4% in call 2, and a final 55% in C4, which corresponded to maintenance of good adherence of 61% in the whole sample. This data confirms that adherence to CT is around 50% in the community as data is very similar in published works. However in our case we have differentiated the behaviour towards CT adherence a bit more as there is a lot of variability. There are patients that are mid-way of doing it good or poorly, moderate which may be included as good or poor use in other publications. We observe that it is at this group were there has been the main changes, most resulting in a deterioration of their CT relationship, especially when patients are at NH where we demonstrate a worsening of behaviour towards CT use and implementation. We did not obtain significant changes in consumption patterns that initially, were worst at home although there is a deterioration of values of worsening at NH compared to H. In any case there is no correlation of consumption patterns with use and we found patients who, although they describe good use, do not show consumption adjusted to the referred use. This indicates a bad management of resources and they must accumulate product.

We encountered a better management of CT at H with improvements of behaviour as we follow through. Our work shows a better capacity for changing at H than NH with better adaptation and capability of changes at H. We have studied previously this matter in the work published in relation to our findings on diet textures and viscosities which were found to be more rigid at NH [38]. There were significant improvements of use at H vs NH, and relating to implementation as well.

In our data we confirm OD’s chronicity as CT is used up to 8.5 years. There was a good percentage of persistence over the study although we are quite aware of the limitation of our study with relies on self-reported information from patient or carer which makes for instance difficult to confirm the use in a daily basis, hence a proper persistence. Our hypothesis was based in perception of CT rejection, displeasure and also alteration in request for deliveries but adherence in our population matches with expectations of sample calculation. We confirm that the main reason of lack of adherence is dislike with CT. It has been described that starch thickeners such as the one used in our study have been found to leave a grainy texture and a certain starchy taste especially in nectar and honey [30]. In that sense we believe that the new versions of xanthan gum-based thickeners will have a positive influence although they have also been reported to be rougher than the previous ones [30]. Both CT’s have their advantages and disadvantages, however, the treatment that our patients are familiar with is this one, we have never distributed a different one, and it is this adherence that we wanted to reflect. Among other aspects described of lack of adherence we found the lack of perception of a problem. This is described specially in dysphagic stroke patients who rarely perceive that they have a swallowing problem [39]. Other factors such as low fluid intake or differences in guidelines have been taken into account in the questionnaire itself. It should be noted that there is a subgroup of patients who do not have an indicated regimen, a situation commonly described for OD [10]. We have considered that there is a great variability in this situation and therefore it cannot be determined whether they follow specific guidelines although there may certainly be patients who perform well but we believe it is important that there is professional supervision to contrast and above all to describe their situation. There is a great need to raise awareness about the identification and treatment of OD [40] and a better adequacy of defined treatments could help to better comparisons.

In terms of water assessment it is difficult to assess the actual total fluid intake and relate it to hydration as many factors are involved in the requirements such as muscle mass, physiological circumstances etc. (21). There is currently no consensus on the most correct methodology for assessing total fluid intake (22). A 24-hour count may not be representative as there are many variations in requirements but there is no validated method and within nutrient analysis it is a widely used resource(23)(24). In our study we identified the estimated amount of water and fluids per patient and found that water intake is low but when total fluids are added up, a good minimum intake is achieved. Also we did not find interference with CT in liquid consumption but we definitively need to investigate this issue more thoroughly.

In any case, in all aspects we have the limitation of telephone data collection; we have to rely on the information provided by the patient or caregiver. However, patients are used to refer us information and request and we have contrasted the information they gave by retest changing the interviewer and checking with what has been recorded. In institutions we found very erratic ones and more organized ones, aspects that have been taken into account. With regard to water, there are homes with hydration protocols, but we would really have to investigate this issue more thoroughly. A positive aspect of the study is that it is a prospective study with a considerable sample size, which provides information on the behaviour of patients undergoing CT treatment.

Adherence or compliance to CT needs a lot of reinforcement as we see that patients who showed a moderate implementation are the ones that varied a lot their behaviour. Surely we need to focus in studying possible reasons and maybe go further and analyse whether they evolve into more complications. We also believe that increased awareness and, above all, better patient information will contribute to a better approach to treatment and adherence. Studies have shown that better health information is necessary to improve adherence and above all better control of consumption [21], and we should not forget that poor discharge communication could lead to inappropriate post-hospital dysphagia care, with resultant aspiration pneumonia and need for costly re-hospitalisation [41]. In conclusion, while we thought that the data on use would be worse, the response has generally been fair, with a very positive attitude to patient care. Above all, it is important to stress the importance of follow-up because in our case adherence is maintained over the time period studied (at H). Despite NH reflect a good use at first it deteriorates over time which is supported by evidence as adherence studies show that long-term treatment deteriorates even when initial adherence is good [17].

We have encountered a good persistence in our case. We have developed our own questionnaire according to the management we make and although we have the bias of obtaining information we have tried to contrast information all the time. This has led us to a better assessment of CT use and to better adjust delivery orders. In fact, we have been able to better determine the quantity of thickener for each person by making the order more individualised, changing the method of management to individualised requests. This study emphasizes the clinical relevance of adherence to CT and the need of its long term follow up.

Conflict of interest

None of the authors have any conflict of interest or financial disclosures.

This paper has been made with hospital resources .No funding sources have been used.

Acknowledgments

All authors had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Finally, a special mention goes to the patients for their dedication in the development of this study.

Rafalimanana H. World Population Ageing. 2020. (Accessed june 2022).
Barroso J. Disfagia orofaríngea y broncoaspiración. Rev Esp Geriatr Gerontol 2009;44:22–8.
Lopez Mongil R. From the symptom to the syndrome, in nutritional intervention in patients with dysphagia. 2014.
Hayashi M, Yahiro A, Sakuragi Y, Iwamatsu K, Sakamoto H, Kaizuka Y, et al. Impaired Swallowing in Hospitalized Patients: An Observational Study in a Community Hospital in Japan (2012-2014). Nurs Res 2016;65:389–96.
INEbase / Demografía y población / Cifras de población y censos demográficos / Censos 2011 / Características de población en colectivos n.d. https://www.ine.es/censos2011_datos/cen11_datos_caracteristicas_col.htm (accessed December 28, 2021).
Idescat. Anuario estadístico de Cataluña. Instalaciones para las personas mayores. Residencias. Por titularidad. Comarcas y Aran, ámbitos y provincias n.d. https://www.idescat.cat/pub/?id=aec&n=849&lang=es (accessed November 7, 2020).
García-Peris P, Parón L, Velasco C, de la Cuerda C, Camblor M, Bretón I, et al. Long-term prevalence of oropharyngeal dysphagia in head and neck cancer patients: Impact on quality of life. Clin Nutr 2007;26:710–7.
Carrillo Prieto E, Aragón Chicharro S, García Meana JF, Calvo Morcuende B, Pajares Bernardo M. Disfagia y estado nutricional en ancianos institucionalizados. Gerokomos 2016;27:147–52.
Peñalva-Arigita A, Prats R, Lecha M, Sansano A, Vila L. Prevalence of dysphagia in a regional hospital setting: Acute care hospital and a geriatric sociosanitary care hospital: A cross-sectional study. Clin Nutr ESPEN 2019;33.
Krekeler BN, Broadfoot CK, Johnson S, Connor NP, Rogus-Pulia N. Patient Adherence to Dysphagia Recommendations: A Systematic Review. Dysphagia 2018;33:173.
Clavé P, de Kraa M, Arreola V, Girvent M, Farré R, Palomera E, et al. The effect of bolus viscosity on swallowing function in neurogenic dysphagia. Aliment Pharmacol Ther 2006;24:1385–94.
Cichero JAY, Steele C, Duivestein J, Pere C, Chen J, Kayashita J, et al. The Need for International Terminology and Definitions for Texture-Modified Foods and Thickened Liquids Used in Dysphagia Management: Foundations of a Global Initiative. Curr Phys Med Rehabil Rep 2013;1:280–91.
Malagelada JR, Bazzoli F, Boeckxstaens G, De Looze D, Fried M, Kahrilas P, et al. World gastroenterology organisation global guidelines. J Clin Gastroenterol 2015;49:370–8.
Newman R, Vilardell N, Clavé P, Speyer R. Effect of Bolus Viscosity on the Safety and Efficacy of Swallowing and the Kinematics of the Swallow Response in Patients with Oropharyngeal Dysphagia: White Paper by the European Society for Swallowing Disorders (ESSD). Dysphagia 2016;31:232–49.
Rofes L, Arreola V, Martin A, Clavé P. Effect of oral piperine on the swallow response of patients with oropharyngeal dysphagia. J Gastroenterol 2014;49:1517–23. https://doi.org/10.1007/s00535-013-0920-0.
O’Keeffe ST. Use of modified diets to prevent aspiration in oropharyngeal dysphagia: is current practice justified? BMC Geriatr 2018;18:167.
Low J, Wyles C, Wilkinson T, Sainsbury R. The effect of compliance on clinical outcomes for patients with dysphagia on videofluoroscopy. Dysphagia 2001;16:123–7.
Haynes RB, Sackett DL, Gibson ES, Taylor DW, Hackett BC, Roberts RS, et al. Improvement of medication compliance in uncontrolled hypertension. Lancet (London, England) 1976;1:1265–8.
Dilla T, Valladares A, Lizán L, Sacristán JA. Treatment adherence and persistence: Causes, consequences and improvement strategies. Aten Primaria 2009;41:342–8.
Vrijens B, De Geest S, Hughes DA, Przemyslaw K, Demonceau J, Ruppar T, et al. A new taxonomy for describing and defining adherence to medications. Br J Clin Pharmacol 2012;73:691–705.
Gellad WF, Grenard JL, Marcum ZA. A systematic review of barriers to medication adherence in the elderly: Looking beyond cost and regimen complexity. Am J Geriatr Pharmacother 2011;9:11–23.
Plaza Moral V, Fernández Rodríguez C. Adhesión terapéutica en las enfermedades respiratorias. vol. 53. 2013.
Krekeler BN, Vitale K, Yee J, Powell R, Rogus-Pulia N. Adherence to Dysphagia Treatment Recommendations: A Conceptual Model. J Speech Lang Hear Res 2020;63:1641.
Rosenvinge SK, Starke ID. Improving care for patients with dysphagia. Age Ageing 2005;34:587–93.
Shim JS, Oh B-M, Han TR. Factors Associated With Compliance With Viscosity-Modified Diet Among Dysphagic Patients. Ann Rehabil Med 2013;37(5)628-632 2013.
Clavé P, Terré R, de Kraa M, Serra M. Actitud a sguir ante una disfagia orofaríngea. Rev Esp Enfermedades Dig 2004;96:119–31.
Hooper L, Bunn D, Jimoh FO, Fairweather-Tait SJ. Water-loss dehydration and aging. Mech Ageing Dev 2014;136–137:50–8.
Barrio-Cantalejo IM, Simón-Lorda P, Melguizo M, Escalona I, Marijuán MI, Hernando P. Validation of the INFLESZ scale to evaluate readability of texts aimed at the patient Correspondencia: Inés María Barrio-Cantalejo Distrit. An Sist Sanit Navar 2008;31:135–52.
Fehring RJ. Methods to validate nursing diagnoses. Hear Lung J Crit Care 1987;16:625–9.
Cichero JAY. Thickening agents used for dysphagia management: Effect on bioavailability of water, medication and feelings of satiety. Nutr J 2013;12:54:1–8.
Ong JJX, Steele CM, Duizer LM. Sensory characteristics of liquids thickened with commercial thickeners to levels specified in the International Dysphagia Diet Standardization Initiative (IDDSI) framework. Food Hydrocoll 2018;79:208–17.
Espinosa Val MC. Estudio del cumplimiento de las recomendaciones para adaptar la textura de los líquidos y de la dieta en los pacientes con Disfagia dados de alta de una unidad de psicogeriatría. TDX (Tesis Dr En Xarxa) 2018.
Leiter AE WJ. Compliance of geriatric dysphagic patients with safe-swallowing instructions. J Med Speech Lang Pathol 1996;4:289–300.
López-Romero LA, Romero-Guevara SL, Parra DI, Rojas-Sánchez LZ. Adherencia Al Tratamiento: Concepto Y Medición. Hacia La Promoción La Salud 2016;0121–7577:117–37.
Oriol-Peregrina N. Cuestionario de adherencia para las adaptaciones dietéticas en disfagia. Rev Investig En Logop 2018;8:91–114.
Carvajal A, Centeno C, Watson R, Martínez M, Sanz Rubiales Á. ¿Cómo validar un instrumento de medida de la salud? An Sist Sanit Navar 2011;34:63–72.
Castañeda Hernández ÁH. Calidad de vida y adherencia al tratamiento de personas con enfermedad crónica oncológica. Rev Cuid 2015;6:906.
Peñalva-Arigita A, Lecha M, Sansano A, Prats R, Bascuñana H, Vila L. Differences in the use of food textures in oropharyngeal dysphagia according to the place of living. Clin Nutr ESPEN 2022;48:196–201.
Parker C, Power M, Hamdy S, Bowen A, Tyrrell P, Thompson DG. Awareness of Dysphagia by Patients Following Stroke Predicts Swallowing Performance. Dysphagia 2004;19:28–35.
Benfield JK, Everton LF, Bath PM, England TJ. Accuracy and clinical utility of comprehensive dysphagia screening assessments in acute stroke: A systematic review and meta-analysis. J Clin Nurs 2020;29:1527–38.
Ney D, Weiss J, Kind A, Robbins J. Senescent Swallowing: Impact, Strategies and Interventions. Nutr Clin Pr 2009;24:395–413.

Table 2,3,4,6,7,8 are available in the Supplementary Files section.

Download PDF

Journal Publication

published 16 Jan, 2024

Read the published version in BMC Geriatrics →

Editorial decision: Major revision
10 Jun, 2023
Reviewers agreed at journal
27 Mar, 2023
Reviewers invited by journal
27 Oct, 2022
Submission checks completed at journal
29 Sep, 2022
Editor invited by journal
18 Aug, 2022
Editor assigned by journal
17 Jul, 2022
First submitted to journal
17 Jul, 2022

You are reading this latest preprint version

Adherence to commercial food thickener used for treatment of oropharyngeal dysphagia in the community. A year follow-up.

Status:

Journal Publication

Version 1

Abstract

Rationale:

Aim

Methods

Results

Conclusions

Figures

Introduction

Material And Methods

Study design

Study population

Procedure

Control-Calls

Adherence Study

Questionnaire

Questionnaire development

Implementation

Validation questionnaire

Variables

Statistics

Results

Descriptive Data

Use

Hydration

Consumption

Implementation

Persistence

Reasons for lack of adherence

Discussion

Conclusion

Declarations

References

Table 2,3,4,6,7,8

Supplementary Files

Status:

Journal Publication

Version 1