The search strategy returned a total of 969 references across all databases. After deduplication and removal of pre 2011 references, the titles and abstracts of the remaining 479 references were screened. Of those 479 references, 249 were selected for full-text screening and 70 articles were ultimately included in this scoping review. Reasons for exclusion are stated in a PRISMA flow chart prepared as per Khalil et al. (2016) [26] (Figure 1).
Figure1: PRISMA Flowchart Outlining the Selection Process for PSP-related Articles
3.1 Characteristics of Research Articles and the PSPs they Described
Articles selected were published over a period of 10 years (2011 - 2020), with two-thirds of the articles published from 2017 to 2020 (47 articles), as shown in Figure 2. The studies were conducted in the United States (26) Canada (11), Germany (6), the United Kingdom (6), and China (4) as well as other countries in Europe, Asia, Africa, and Australia (Figure 3); some articles described PSPs delivered in multiple countries.
The included articles describe PSPs that support patients with various chronic conditions, and are reported within the following disease categories: immunology (15), cardiology, metabolism and endocrinology (12), psychology/mental health and addictions (10), neurology and the central nervous system (CNS) (9), infectious diseases and vaccines (9), oncology (6), respirology (4), musculoskeletal and osteology (2), nephrology, renal and urology (1),chronic diseases in general or multiple disease areas (2) (Figure 4). Fifty-six unique PSPs were identified, and are reported within the disease categories described above (Figure 5). These PSPs were primarily funded and delivered by government organizations (23) and by private drug or medical device manufacturers (18), followed by specialty pharmacies (3), non-governmental groups (e.g. not-for-profit organizations) (1), private hospitals (1), private payers (e.g., insurance companies) (1), and various partnerships among these organizations (10) (Figure 6). A list of the sponsoring organizations is reported in Online Resource, ESM3. All studies were associated with at least one clinical, humanistic or economic outcome (Figure 7), examples of which are included in Online Resource, ESM4. The majority of these articles were observational in nature (41 articles) including case control studies and cross-sectional surveys, other research designs were quasi-experimental (18), with comparators, but with no randomization and experimental (11), including randomized controlled trials.
Figure 2: Number of Research articles categorized by year of publication
Figure 3: World map showing the distribution and number of PSP-related articles included in this scoping review
Figure 3 was generated by AR using the data collected from this scoping review and the Anaconda installation of Python 3.8.5 and PyCharm Community 2020.1 with plotly, numpy, pandas, re and os modules. AR acknowledges stack overflow for the Python code tutorial in using these utilities for map generation published at https://stackoverflow.com/questions/59297227/color-map-based-on-countries-frequency-counts. See acknowledgements for more details.
Figure 4: Number of articles included in this scoping review, categorized by disease area
Figure 5: Distribution of the number of unique PSPs across disease areas
Cardio-Metab. and Endo. = Cardiology, Metabolism and Endocrinology, Psychiatry-Mntl. Hlth. and Addictions = Psychiatry, Mental Health and Addictions, Neurology and CNS = Neurology and Central Nervous System, Infect. Dis. and Vac. = Infectious Diseases and Vaccines, MSK and Osteology = Musculoskeletal and Osteology
Figure 6: Organization types and parternships that funded the unique PSPs identified in this scoping review
Total count for PSPs in this bar graph is 57, although only 56 unique PSPs were identified. The reason for this is that a PSP that was typically offered by a private manufacturer alone [27-31], was delivered as part of a government-private manufacturer partnership [32] in onearticle.
Figure 7: Number of articles that address clinical, humanistic and/or economic outcomes
3.2 Subthemes Identified
Twenty-five subthemes emerged from the various services offered as part of the 56 unique PSPs identified (Table 2 and Figure 8). These subthemes were allocated to one of three people-centered categories as informed primarily by the WHO vision for IP-C health care [1]. Eight subthemes were grouped under the access and equity category, ten subthemes were grouped under the quality and health services category, and seven subthemes were grouped under the patient and caregiver empowerment and self-management services category.
3.2.1 Access and Equity
Eight PSP service subthemes that facilitate access to health care services and that provide resources to support social equity to facilitate access to health care services were identified. These subthemes include social services support, access to health care providers, increasing awareness of PSP availability, navigation or referral to resources or programs, financial services for medication access, logistics services, information technology and systems and cultural accessibility services (sections 3.2.1.1 to 3.2.1.8 below).
3.2.1.1 Social Services Support
Only one PSP reported that socio-economic needs – such as food security, housing and access to free enrollment in kindergarten for children – were provided for as additional supports necessary to help multi-drug resistant tuberculosis patients succeed with treatment [33]. This PSP was sponsored and delivered by a joint partnership of the East Kazakhstan Oblast (a government department) and the United States Agency for International Development (a not-for-profit organization).
3.2.1.2 Access to Health Care Providers or other Support Personnel
Most PSPs (55) provided access to health care providers, including nurses, case managers, pharmacists, pharmacy technicians, primary care medical doctors, specialists, dieticians, social workers and psychologists. The PSPs either provided reimbursement to health care providers in private practice, such as doctors or pharmacists, or directly hired health care professionals such as registered nurses or psychologists to act as coaches or case managers, who educate, counsel, train and/or monitor patients to support disease management. Alternatively, some PSPs provided access to non-medical support staff that carried out administrative services. For example, as part of a private industry sponsored program for patients living with schizophrenia, PSP staff provided drug access and drug shipment support, care transition coordination, navigation assistance, and follow up for missed appointments [34]. As part of a government and (non-governmental) NGO sponsored-linkage case management program, Human Immunodeficiency Virus (HIV) positive peers, trained as Antiretroviral Therapy (ART)-adherent expert-client counselors, provided psychosocial support and ART adherence counseling to patients [35].
3.2.1.3 Increasing Awareness of PSP Availability
Only one PSP described specific activities to increase awareness of the PSP to health care providers and patients. For example, in the case of a stroke transition program delivered by a network of government hospitals, a nurse coordinator made site visits to engage community partners, including pharmacists, the Area Agency on Aging, and home health providers to increase awareness of the transition program [36].
3.2.1.4 Navigation or Referrals to Resources and Programs
Seventeen PSPs offered navigation or referrals to financial, medical, social or rehabilitation services. For example, a navigation service, as part of a telephonic patient support on treatment for opioid dependence, provided direction to community resources such as a buprenorphine treatment counselor [37]. In a methadone maintenance treatment program, referrals were made for clinical visits; the program also provided navigation to psychiatric services, alcohol treatment, legal assistance, and social service entitlements [38].
3.2.1.5 Financial Services for Medication Access
Eleven PSPs offered assistance in accessing medication including coverage coordination, co-pay assistance, reimbursement assistance, or access to discounts for the provisions of drugs. For example, a government-sponsored community health clinic in the United States facilitated medication access at a reduced cost through the 340B Drug Pricing Program and patient assistance programs (PAPs) [39].
3.2.1.6 Logistics Support Services
Twenty-five PSPs offered logistics support, providing services in a range of ways including: in-person, at home, remotely, via zoom, or at a funded local care center. Specific types of logistics support services included facilitating access to medication through direct delivery and disposal of supplies or extending hours for medication reordering (e.g. automatic delivery). Other forms of logistics support included providing scheduling assistance, coordinating medication infusions, providing transportation options or escort service; or providing assistance in completing any kinds of documentation. For example, as part of a psychosocial support program for patients diagnosed with multidrug-resistant tuberculosis, home visits for social, psychological and clinical services were provided [33]; as part of a privately-funded colorectal cancer PSP, the shipment of cancer medications to patients’ residences were coordinated [40]; and as part of a telemedicine program to deliver asthma care remotely, biweekly virtual visits using Zoom’s via smartphone were provided [41].
3.2.1.7 Information Technology and Systems
Of the programs reviewed, 11 reported utilizing information technology systems to facilitate access to care and information. These technologies included on-line portals, clinical information systems, interactive progress-tracking or monitoring tools for patients and health care providers, secure web platforms and clinical decision-making tools for health care provider support, web-based technologies to assess symptoms and generate reports to allow for integrated electronic physician authorization for medications, home care via an interactive web-based telemonitor, and automatic reminders installed on the sites’ computers for health care providers. For example, as part of veteran’s smoking cessation program, an electronic text data capture system was used to deliver assessment questions at 1, 3, and 6 months post-quit date, and the system also provided interactive, on demand tips for coping with craving stress or lapse prompted by keys words [42]. As part of a multiple sclerosis medication adherence program, a secure web platform was used to guide pharmacist consultation with patients [43]. The system supplied a graphic illustrating the patient’s drug intake profile in both calendar and chronological formats, and included a clinical decision-making support system coupled with a safety alarm system [43]. One digital medicine technology, a wireless, observed therapy, information system that was delivered using a mobile app and software, calculated and summarized adherence patterns, physical activity, rest and other self-reported clinical data. Patients viewed this data through a mobile device and providers viewed the data through a secure web portal as part of an oral Hepatitis C medication adherence program [44]. One system allowed patients to upload symptom data directly to an electronic medical record (EMR) via an app. This was followed up by nurse reviews through computer decision support software (CDSS) that used algorithms to calculate asthma severity and provided a comparison of recommended versus prescribed stepwise therapy. The CDSS tool was designed to improve assessment accuracy, guide step-wise medication management, inform providers and help patients achieve better asthma control and medication adjustments via e-prescribing [41].
3.2.1.8 Cultural Accessibility Services
Four PSPs reported providing culturally appropriate and accessible services. These services included financial assistance for individuals without insurance and language translation services. For example, indigent patient assistance (free medication if no insurance was available) was offered as part of a PSP for adults with acne [45], culturally appropriate diabetes education was offered as part of a government-run program for residents in a poor urban area in India [46], the translation of text message reminders into various languages including English, Kiswahili or Dholuo was offered as part of a Kenyan malaria program [47], and a bilingual Spanish-speaking clinician was provided as part of a community health asthma clinic service in the United States [39].
3.2.1 Health Care Services
Ten subthemes that describe health services offered as part of the PSPs were identified including screening and assessment; care coordination and communication; follow-up; reminders; care plans; monitoring; medical, clinical and pharmacy; laboratory; quality assurance and safety systems; and support for health care providers and case managers (see sections 3.2.1.1 to 3.2.1.10).
3.2.1.1 Screening and Assessment
Twenty PSPs included screening and/or assessment as part of the service offering. These services including screening or assessment of physical, clinical, somatic, psychiatric, psychosocial or socioeconomic problems, disease, medication or therapy management needs. The information gathered was used to evaluate changes and the achievement of goals set based on problem lists, for the identification of individual care problems, for the assessment of abilities and the need for advice, training or supportive devices, and to assess substance abuse, and disease symptoms. For example, as part of a maintenance program for patients living with schizophrenia in China, baseline evaluations were conducted to assess the health condition, recovery status, daily functioning, employment status, and social activities of program participants [48, 49]. In a community program in the United Kingdom, psychiatric clinical evaluations and prognostic assessments were conducted for individuals with psychosis [50]. As part of a pharmaceutical case management program offered in the US aimed at reducing drug-related problems (DRPs) medication history, a review of the indication as well as medication effectiveness, safety and adherence were assessed [51].
3.2.1.2 Care Coordination and Communication
Twenty-four PSPs reported services related to care coordination or communication. These services included coordinating therapies and providing interdisciplinary care through collaboration and/or communication among multidisciplinary team members (e.g., physicians, nurses, pharmacists, dietitians, clinical social workers or psychiatrists). For example, in Canada, as part of a schizophrenia care transition program providing patient information, the program coordinator was responsible for several tasks that supported the patient’s post-program medication regimen, including notifying the outpatient facility of the patient’s discharge date, medication requirements and next injection due date. Support also included verifying whether the outpatient facility had the capacity to have medication available for the patient so that the patient could maintain their injection regimen according to the schedule [34]. In another example, an interdisciplinary case management team – consisting of one community psychiatrist, one nurse and one community health worker – collaborated to help patients manage living with schizophrenia as part of a community-based case management program [48, 49]. In the case of an oncology program in the United States, nurses assessed patients’ post-chemotherapy treatment through phone calls and directed patients to their physicians when adverse effects were identified and required clinical monitoring or when intervention was needed [52]. Similarly, pharmacists faxed a one-page summary to physicians and communicated with patients and physicians about DRPs when necessary [51].
3.2.1.3 Follow up
Twenty-one PSPs reported a broad range of follow up services for program participants. These services included nurse calls and text messaging. Nurse calls were made to confirm medication delivery, improve appointment attendance, improve the input of self-reported health information after days missed, provide motivational interviewing for self-injection and device handling, or to monitor adverse events after treatment. These calls were also made for medication reassessments or post-monitoring, sometimes using electronic system information to help patients achieve target drug dose or to ensure appropriate disease management. For example, as part of a mHealth technology combined antiretroviral therapy program for women and families with HIV, participants received a weekly automated text message to check on their health status for one year. Participants were asked to respond each week, within 48 hours, if they were “OK” or had a “problem.” A study nurse monitored responses and responded to all “problem” texts from participants. Participants who did not respond to the initial text were sent a second message after the first 48 hours. If there was still no response, the clinic nurse called participants the next day. If there was again no response, participants were texted as per usual the following week [53]. In another example, as part of a specialty pharmacy PSP for cancer patients, participants received monthly follow up phone calls to assess medication adverse effects and adherence, ultimately with the goal to improve patient safety and adherence [54]. As part of a telemedicine program offered for kidney transplant patients in Germany, patients completed a pre-defined medical questionnaire about their physical condition in their homes via an interactive web-based telemonitor. The data were monitored by qualified medical staff. If anomalous values occurred, the medical staff contacted the patient by phone or video conference to discuss the following treatment process [55].
3.2.1.4 Reminders
Twenty PSPs reported offering reminder services for patients. These reminder services were offered for a variety of reasons and delivered through various mediums. Reminders were provided to patients to take their medication or injections, obtain refills, follow up with their physician, take lab/medical tests, input health information (e.g., glucose levels) for appointments, or to remind of a missed dose, unscheduled visits, screening, training or complete assessments. These reminders were delivered by phone calls, text messages or paper (reminder cards or monthly calendars mailed to patients). For example, a nurse call reminder service was employed in a PSP for women with osteoporosis to remind them to book their next appointment at the prescribed 6-month interval [56]. In a text-based insulin titration program, reminders were sent to participants to input blood glucose levels. Every weekday, at a patient-specified time, participants received a text message asking, “What was your fasting blood sugar this morning?” [57].
3.2.1.5 Care Plans
Eight PSPs reported using care plans to assist patients in managing their disease conditions. These plans contained individualized care recommendations, written feedback on personal problem profiles, and goals for changing health behaviors and reducing risk factors. Some factors that the individualized care plans addressed include education, secondary prevention, rehabilitation, recovery, referrals to community-based resources, caregiver support services such as family psychological intervention, patient-specific case management plans, information on drug adherence training, or daily skills training. Care plans were sometimes used as a tool for the development of shared solutions, for example as part of a multiple sclerosis management program [58]. Care plans developed for patients as part of a multidrug resistant tuberculosis program were focused on treatment retention and were individualized based on psychological and social assessments [33]. Other PSPs included advance care planning, including help to complete advance directives in the case of a transition program for vulnerable seniors and a cancer care program [59, 60]. A PSP for diabetes management included an action plan for changing health behaviors [61].
3.2.1.6 Monitoring
Fifteen PSPs offered monitoring services to support patients with disease management and medication adherence. Monitoring services were often digital and involved progress-tracking, symptom tracking, or medication adherence monitoring with alarms addressed by health care providers. Information was monitored in real time or asynchronously, and periodic patient evaluations by health care providers. As part of the services offered for a maintenance program for patients living with schizophrenia and taking antipsychotic drugs, periodic psychological evaluations were conducted at baseline and at 6-, 12-, and 24-month visits [48]. A digital medicine program utilized medication packaged with an ingestible sensor and a wearable sensor patch to track ingestions events, termed “wirelessly observed therapy”. The digital medicine program directly measured medication ingestion adherence, heart rate, physical activity, and other biometrics. It then provided real-time feedback to patients and health care providers via mobile devices and a dedicated web portal to support patient self-management and facilitate therapy optimization by the health care provider [44]. Another PSP used a pharmacy dispensation system to actively monitor chronic obstructive pulmonary disease patients’ use of bronchodilators at 6 and 9 months as an indication of their disease management status [62]. A school asthma program follow-up monitoring service was conducted by school health staff who contacted the child’s caregiver to reassess symptoms using a web-based application. If a child continued to have symptoms that were not well controlled, a guideline-based step-up in therapy was employed [63]. In the case of a nephrology PSP, data from a pre-defined medical questionnaire about their physical condition was presented to patients in their homes via an interactive web-based telemonitor and responses were monitored by medical staff [55].
3.2.1.7 Medical, Clinical or Pharmacy
Twenty-four PSPs reported providing medical, clinical or pharmacy services. Services included consultations such as clinic visits and post-prescription support services such as drug or vaccine injection or drug infusion services, drug adjustment and adverse event problems, clinical diagnostic measurements and reordering of medication and review of treatment. Other services included home visits for assessments or crisis resolution and health care services provided in response to medical alerts. As part of a text-based insulin titration program, registered nurses called patients once weekly to advise on dose titration using structured algorithms that adjusted dose based on patient input values for blood glucose levels [57]. In a community program for patients with psychosis, home treatment teams provided rapid access and intensive psychological support services in the community to prevent the need for hospitalization [50]. As part of a community asthma care program, one-on-one consultations with a clinician were made available [39], and as part of a Chronic Obstructive Pulmonary Disease (COPD) management program led by pharmacists, interdisciplinary care was offered so that proposals for dose, medication and/or inhaler change, and physical activity or diet recommendations were discussed with the general practitioner, physiotherapist or dietician, when deemed relevant [62].
3.2.1.8 Laboratory
Six PSPs reported offering laboratory services to support patients with disease or drug management or disease transmission management. These services included therapeutic drug-level testing [64], serological testing of patients, partners or family members for HIV or viral hepatitis [35, 38, 44], HIV drug resistance testing [65], pregnancy testing [44] and measuring blood cell count [40].
3.2.1.9 Quality Assurance and Safety Systems
Nine PSPs reported having quality assurance or safety systems in place. These systems included audit and feedback systems to assess health care provider performance, a requirement for the use of clinical practice guidelines, the use of health care provider reviews, checklist tools to ensure fidelity of the interventions applied, and the use of biometric technologies to assist health care providers in tracking patient treatments. In a PSP developed for hypertensive patients, HCPs were sent data on panel performance with unblinded provider rankings, and a list of their hypertensive patients. Individualized, bimonthly reports were also sent to faculty providers via e-mail and to medical residents via meeting with the residency quality improvement faculty member [66]. In the case of a school program of asthma maintenance, clinical practice guidelines were used in the development of assessment materials [36]; for a stroke transitional care program, standardized clinical assessments that include social and functional determinants of health informed individuals patient care plans [46]; and, as part of a PSP for a diabetes management, clinicians use standardized clinical guidelines [63]. In the case of a nurse practitioner (NP)-led intervention for older adults, the NPs used a checklist at each client visit/contact to provide structure and record their intervention activities. Subsequently, biweekly case reviews were held where the intervention records were read and cases were discussed to ensure fidelity of the intervention [59]. As part of a TB treatment program, an electronic biometric system known as “eCompliance” was used to assist health care providers with the monitoring of TB treatment for patients and the efficacy of their teams [67]. The electronic system scanned patients’ fingerprints at a netbook computer terminal during every visit. This information was used by supervisors to ensure the efficacy of the work that their teams were doing, particularly as the biometric requirement ensures that all information reported by field workers was true, and that all patient visits were recorded at the correct time.
3.2.1.10 Support for Health Care Providers and Case Managers
Seventeen PSPs provided support services for health care providers and case managers responsible for delivering patient care. These services included education and training, tools to facilitate care provision, and peer support resources. Clinical decision-making support systems, information systems, and automatic reminders installed on site computers were also provided (see more detail in the, Information Technology and Systems section 3.2.1.7). As part of a program to promote viral load suppression for highly vulnerable people living with HIV, interdisciplinary adherence support teams that consisted of medical doctors, case managers, and clinical social workers were trained in Cognitive Behavioral Therapy (CBT) and Motivational Interviewing (MI) modalities of engagement. Training occurred over multiple booster sessions throughout the course of the intervention as adherence teams engaged in periodic sessions with participants as part of the program [68]. As part of a stroke transition care program, a 2-day interdisciplinary training in post-acute care was provided for nurses and advanced practice provider training was provided for physicians. In addition, monthly peer support calls were provided for hospital providers and home health clinicians [36].
3.2.2 Empowerment and Self-Management
Seven PSP service subthemes were identified that support patient and caregiver empowerment and self-management, including patient counselling, patient education, patient training, support for caregivers and family members, self-management incentives for engagement, self-management supplies, devices, aids, tools and apps, and capturing patient reported experience measures, see sections 3.2.2.1 to 3.2.2.7.
3.2.2.1 Patient Counselling
Twenty-nine PSPs included patient counselling as part of the service offering. Counseling services covered a broad range of topics including behavior and attitude modification, pregnancy prevention, managing drug adverse effects, medication or therapy adherence, preparing for clinical appointments, goal setting, problem solving, self-care, informational counselling, addressing misguided beliefs and promoting self-efficacy. Support was provided via group or one-on-one counselling sessions or through digital media such as text messages. As part of a PSP for diabetes, counselling services included role play, problem solving among patients, and group sessions. These sessions focused on realistic aspects of physical activity and nutrition, an open discussion of setting goals, and a strategy to overcome any obvious barriers [69]. As part of a COPD PSP, counseling services focused on several aspects of adherence including beliefs and expectations, reminders, and highlighting importance of continuous use in accordance with prescription, support for cessation of smoking, and recommendations regarding self-management [62]. As part of a hypertension management program after stroke, advanced practice nurses called program participants a minimum of once per month, using MI techniques to promote risk factor reduction over a period of six months [70]. In another example, as part of a HIV case management program, trained peer counsellors offered information counselling and counselling support to address real and perceived barriers to care, disclosure to partners or family members and HIV care [35].
3.2.2.2 Patient Education
Thirty-four PSPs offered educational components to participants. Some of these educational strategies involved active engagement, for example, face-to-face or virtual educational sessions, simulations or groups sessions, while others were more passive in nature, delivered in magazines, booklets, posters, DVDs, newsletters, step-by-step instructions for medical devices (injectors), web-site access for treatment information, online electronic-series or email communications. These educational tools covered a broad range of topics including information about a specific disease, product (handling and storage), drug access, and/or self-management skills. For example, health education for gout targeted misguided beliefs regarding urate-lowering therapy and improvement in self‐efficacy [64]. Also, a 2-day educational program offered for inflammatory bowel disease was designed to improve patient knowledge about the disease, promote health literacy and enhance self-management skills [71]. For a stroke transitional care PSP, the following educational materials were provided: Know your Numbers (e.g., BP, hemoglobin A1c), Engage Mind and Body (e.g., treat depression, engage in rehabilitation), Willingness (e.g., self-manage modifiable risk factors, manage medications), and Support (e.g., seek community support services) [36].
3.2.2.3 Patient Training
Sixteen PSPs included training for patients. Training offered was on the use of medical devices (injection, inhalers, and self-monitoring of measures like glucose or blood pressure), orientation to program tools (on-line and off-line), diet calculations, or food preparation. For example, patients in a program that involved taking an oral medication to treat Hepatitis C packaged along with an ingestible sensor were taught to review an app daily to obtain feedback on their medication adherence. They received hands-on training on the use of the mobile app and software that calculates and summarizes adherence patterns, physical activity, rest, and other self-entered clinical data that patients could view through a mobile device and providers could view through a secure web portal [44]. As part of another PSP for managing multiple sclerosis, patients received training to handle and administer Interferon beta-1b using an autoinjector device [72]. As part of a PSP for persons with diabetes, participants attended group sessions in addition to educational topics including food preparation demonstrations [69].
3.2.2.4 Support for Caregivers and Family Members
Three PSPs provided support for caregivers or family members. A PSP that supported patients living with schizophrenia offered a family psychological intervention as part of their services [48, 49]. Another program designed to support minors managing attention deficit disorder, provided access to trained nurses who by telephone supported the carers of children and adolescent patients, assisting with the management of adverse effects of treatment and with the management of expectation in the initial phase of treatment [73]. As part of a nurse practitioner led PSP for vulnerable adults, theNP included family members, neighbors, and caregivers in the intervention when needed. The NP conducted all assessments and training with the patients and families and developed the care plan [59].
3.2.2.5 Self-management Incentives for Engagement
Four PSPs offered self-management incentives. As part of a diabetes program in the US, co-pay assistance was offered as an incentive only if patients remained engaged in care and agreed by contract to receive the recommended tests and health exams [74]. Alternatively, for a stroke PSP delivered in the US, patients received materials to enhance retention, including mailings and a $10 incentive for survey participation [36]. As part of a PSP for highly vulnerable patients living with HIV in the US, program participants who maintained viral loads at or below 50 c/ml at their quarterly assay were rewarded with a $100 gift card [68]. Finally, as part of a PSP for patients with osteoporosis in Japan, participants received certificates of recognition when they completed the full course of treatment [75].
3.2.2.6 Self-management Supplies, Devices, Aids, Tools and Apps
Thirteen PSPs supplied devices, aids, tools, or apps to support patient self-management. These items included care packages containing medical and/or personal care supplies, coaching kits, medical devices for medication administration or adherence or monitoring (e.g. auto-injector devices, ingestible and/or wearable sensors, digital flow meters), e-devices and virtual resources for information capture, sharing and monitoring (e.g. access to apps, web portals, software, smartphones etc.). As part of a PSP for patients with multiple sclerosis, participants were supplied with a multidose cartridge and an auto-injection device with adjustable comfort settings and equipped with an electronic injection log that could be used for self-monitoring and as a reminder system [76, 78]. As part of a pharmacy case management PSP for patients taking antineoplastic medicines, program participants received a care package containing items to assist with side effect management, medication adherence, and medication monitoring. Care packages also contained other self-care materials and supplies including sunscreen, lip balm, lotion, anti-diarrheal agent, pill organizer, hot/cold pack, water bottle, gloves, pocket calendar, a cancer resource guide, a blood pressure monitor, and thermometer [54]. As part of an electronic medical record-integrated smartphone telemedicine program to deliver asthma care remotely, participants received access to smartphones and a patient portal app through which they recorded symptoms, medication use and Peak Expiratory Flow using a digital flow meter that was also supplied [41].
3.2.2.7 Capturing Patient/Carer-Reported Experience Measures
Five PSPs reported including tools for measuring the patient experience. In most cases patient satisfaction surveys were employed to assess the patient-carer experience [36, 44, 52, 73], and in one case open-ended interviews were conducted to capture patients’ experiences [41]. For example, as part of a PSP for stroke patients, participants in the program were incentivized to complete a patient survey [36]. In a second example, as part of a PSP for youths with ADHD, at the end of the program, carers were asked to complete a satisfaction survey to provide feedback on the service [73].
Table 2: References for PSP Service Subthemes Identified
Service Subtheme/References by Disease Category
|
I
|
C, M and E
|
P/MH and A
|
N and CNS
|
ID and V
|
O
|
R
|
M and O
|
N, R and U
|
V
|
Empowerment and Self-management
|
|
|
|
|
|
|
|
|
|
|
Patient Counselling
|
[27-32], [45], [64], [79-81]
|
[61/84], [66], [69], [70], [74], [82/83]
|
[85], [37], [50], [86], [42]
|
[43/87], [58], [72/88]
|
[35], [68], [38], [65], [44], [53], [33]
|
[89]
|
[62]
|
[56]
|
|
[59]
|
Support for Caregivers/Family Members
|
|
|
[48/49], [73]
|
|
|
|
|
|
|
[59]
|
Patient Training
|
[90], [27-32], [64]
|
[82/83], [69], [66]
|
[48/49]
|
[76- 78], [72/ 88], [58]
|
[44], [53]
|
[41]
|
[62]
|
[75]
|
|
[59]
|
Patient Education
|
[91], [79-81], [27-32], [92], [45], [64], [71]
|
[82/83], [69], [61/84], [93], [70], [74], [66], [36], [46]
|
[94], [37], [86]
|
[76-78], [58], [72/88]
|
[68], [38]
|
[54],[89],[95],[60],[52]
|
[41], [62]
|
[56]
|
|
[59], [51]
|
Self-management Incentives for Engagement
|
|
[74], [36]
|
|
|
[68]
|
|
|
[75]
|
|
|
Self-management Supplies, Devices, Aids, Tools and Apps
|
[27-32], [45]
|
[82/83], [70]
|
[37], [42]
|
[76-78], [43/87], [72/88]
|
[44], [53]
|
[54]
|
[41]
|
|
|
|
Patient/Carer Experience Measurement
|
|
[36]
|
[73]
|
|
[44]
|
[52]
|
[41]
|
|
|
|
Medication Adherence Support
|
[91]*, [27-32]
|
[70]
|
|
|
|
|
|
|
|
|
Access and Equity
|
|
|
|
|
|
|
|
|
|
|
Social Support Services
|
|
|
|
|
[33]
|
|
|
|
|
|
Health Care Provider Services
|
[79-81], [90], [27-32], [81], [92], [45], [64], [71]
|
[69], [82/83], [61/84], [93], [70], [74], [66], [36], [57], [46]
|
[94], [85], [34], [48/49], [73], [37], [50], [86], [42]
|
[76-78], [43/87], [58], [72/88], [96]
|
[35], [68], [38], [65], [44], [53], [47], [67], [33]
|
[40],[54],[89],[60],[52]
|
[39], [41], [62], [63]
|
[75],[56]
|
[55]
|
[59], [51]
|
Patient Support Program Awareness
|
|
[36]
|
|
|
|
|
|
|
|
|
Navigation or Referrals to Resources and Programs
|
[79-81], [64]
|
[61/84], [36]
|
[85], [34], [73], [42]
|
|
[35], [68], [38], [65], [53], [89]
|
[60]
|
[62]
|
|
|
[59]
|
Financial Services for Medication Access
|
[91], [27-32], [92], [45]
|
[82/83], [74]
|
[34]
|
[58]
|
[35]
|
[54]
|
[39]
|
|
|
|
Logistics Services
|
[90], [27-32], [92], [45]
|
[82/83]
|
[94], [85], [34], [48/49]
|
[76-78], [96],
|
[35], [38], [47], [53], [33]
|
[40], [54], [89]
|
[41]
|
[75], [56]
|
[55]
|
[59], [51]
|
Information Technology Systems and Services
|
|
[82/83]
|
[42]
|
[43/87]
|
[44], [53], [67]
|
[54], [95]
|
[41], [63]
|
|
[55]
|
|
Culturally Relevant/Accessibility Services
|
[45]
|
[46]
|
|
|
[47]
|
|
[39]
|
|
|
|
Health Services
|
|
|
|
|
|
|
|
|
|
|
Screening and Assessment/Reassessment
|
[71]
|
[82/83], [61/84], [93], [70]
|
[48/49], [50], [86], [42]
|
|
[35], [38], [65], [44], 1085
|
[60], [52]
|
[41], [63]
|
|
[55]
|
[59], [51]
|
Care Coordination and Communication
|
[79-81], [45], [71]
|
[69], [61/84], [93], [74], [66]
|
[94], [85], [34], [48/49], [73]
|
[76-78], [43/87]
|
[35], [68], [38]
|
726, [52]
|
[41], [63]
|
|
|
[59], [51]
|
Follow up
|
[92], [45], [64]
|
[69], [70], [57]
|
[85], [34], [37]
|
[76-78]
|
[38], [65], [44], [53]
|
719, [60], [52]
|
|
[56]
|
[55]
|
[59],[51]
|
Reminders
|
[79-81], [27-32], [45], [64]
|
[82/83], [57]
|
[34], [37]
|
[43/87], [72/88], [58]
|
[35], [38], [44], [53]
|
[95]
|
[41], [63]
|
[75], [56]
|
|
|
Care plans
|
[71]
|
[61/84], [36]
|
[48/49]
|
[58]
|
[33]
|
[89], [60]
|
|
|
|
[59]
|
Monitoring
|
|
[82/83], [36]
|
[94], [85], [48/49]
|
[43/87]
|
[68], [44], [53], [67]
|
[40], [52]
|
[62], [63]
|
|
[55]
|
|
Medical, Clinical and Pharmacy
|
[90], [92], [64]
|
[82/83], [93], [70], [66], [36], [57]
|
[94], [50]
|
[76-78]
|
[38], [65], [47], [53], [33]
|
[40], [52]
|
[39], [41], [62], [63]
|
|
|
[51]
|
Laboratory
|
[64]
|
|
|
|
[35], [38], [65], [44]
|
[40]
|
|
|
|
|
Quality Assurance and Safety Systems
|
|
[66], [36], [46]
|
[73]
|
[43/87]
|
[67]
|
|
[62], [63]
|
|
|
[59]
|
Support for Health Care Providers and Case Managers
|
|
[61/84], [93], [70], [36]
|
[94], [73], [37]
|
[43/87]
|
[35], [68], [44], [67], [33]
|
[89], [95]
|
[62], [63]
|
|
|
|
I = immunology, C, M and E = cardiology, metabolism and endocrinology, P/MH andA = psychology/mental health and addictions, N and CNS = neurology and the central nervous system, ID and V = infectious diseases and vaccines, O = oncology, R = respirology, M and O = musculoskeletal and osteology (2 articles), N, R and U = nephrology, renal and urology or V = generic chronic diseases or various disease areas; / = indicates articles that describe the same PSP.
Figure 7: Sunburst diagram showing the percentage of PSPs that incorporated each service subtheme, Total Number of Programs (56).
Soc Serv Support = Social Services Support; PSP aware = PSP awareness; Nav Ref - Res Prgm = Navigation/Referrals to Resources or Programs; Financial Serv. = Financial Services, IT Sys and Serv = IT Systems and Services; Cult Access Serv = Cultural Accessibility Services; Px Couns. = Patient Counselling; Px Training = Patient Counselling; Px Education = Patient Education; Self-Mgmt Inc Px Eng - Self-Management and Incentives for Patient Engagement; Self-Mgmt Supp - ; Px/Carer Exp Meas - Patient/Carer Experience Measures; Care Coord and Comm - Care Coordination and Communication; Med, Clin, Pharm - Medical, Clinical, Pharmacy; QA and Safety Sys - Quality Assurance and Safety Systems; Sup HCP = Support for Health Care Providers; Screen and Assess = Screening and Assessment