This study aimed to assess HRQoLs amongst patients with SCD and identify the barriers of health services. In our study, adults with SCD generally experienced poor HRQoL scores in all eight domains, with higher social functioning (SF) scores and lower scores at role limitations due to physical health RP. These findings are consistent with other results from 2 Saudi researches using SF-36 conducted in King Fahad Hospital in Hofuf, King Fahad Central Hospital in Jazan 2015, and in Asir General Hospital, Abu Aresh General Hospital 2020 southern Saudi.11,12 Assessing HRQoL of SCD patients and providing comparisons with HRQoL reported among comparable adults with other chronic diseases or national norms may provide healthcare practitioners with an objective view of the effects and severity and the impact of this disease. In Saudi Arabia, no data are available about the general population’s HRQoL to compare with our SCD sample and previous Saudi research indicated that patients with SCD experience a low HRQoL. 14,15,17
Our present study revealed that age was significantly associated with all HRQoL domains except SF and GH, and age above 40 was a significant, negative predictor of MH. Age was found to be significantly associated with HRQoL among thalassemia patients in a Saudi study published in 201918. Also in the present, study the PF, MH, SF, BP, & GH domain scores were higher among males; a statistically significant association is apparent between gender and (PF and BP); p < 0.05. According to a study conducted in the Asir region of Saudi Arabia by Khaled et al. (2020), female patients exhibited better physical scores than male patients, whereas age had no effect on HRQoL scores.12 Furthermore, Ahmed et al. found no significant association between gender and HRQoL domain scores.11
The current study revealed that the HRQoL of university graduate SCD patients was better and university education was a significant predictor of RE and MH compared to patients with no university degree. Ahmed et al’s reported university degree patients tended to report higher scores on the physical role function, emotional role function, and vitality relative to patients with no university degree. 11
Our present HRQoL domains were higher among those who were insured or employed (exception: GH) and insurance was a significant predictor of PF and GH. In Ahmed et al.’s study, employed patients tended to report better vitality and pain scores than unemployed patients, and in the Southern Saudi study by Khaled et al. insurance, did not significantly affect the physical HRQoL outcomes, meanwhile employed patients reported better scores on role limitations due to physical health problems, higher vitality score and better mental health than unemployed patients.11, 12 Our present study also pointed out that the higher the income, the better the HRQoL (MH, SF, BP); p < 0.05. However, the regression model excluded the income from being an independent predictor, leaving employment as an independent predictor of SF.
Education, employment, insurance, and income are important socioeconomic determinants of health and HRQoL. Adults with higher levels of education are less likely to face financial hardship, attain greater job prestige and social rank, and have greater access to resources, all of which contribute to improved health. Not to mention that educated people tend to value their mental and physical health, which consequently leads to a better QoL. Although the Saudi population receives free healthcare services, having insurance can help patients to feel more secure and offer them access to a wider range of facilities.
The HRQoL scores were higher in all domains among patients with waiting times to receive analgesia < 15 minutes compared with those who waited ≥ 15 minutes; statistical significance was met in domains VT and SF. The linear regression results predict that < 15 minutes of waiting time before receiving analgesia significantly predicts VT. This supports that 65.1% of the sample patients, agreed that waiting times before receiving analgesia are long, perceiving it as a barrier to service provision and hence affecting HRQoL. The delay may be due to the fact that SCD pain may be poorly understood and is subjective, which is difficult to assess objectively. Current HRQoL scores are higher in the ‘none’ admission and least with ≥ 5 admissions in the last 6 months, the regression model clearly indicated that the ‘none’ admission significantly predicts PF, MH, SF, and BP. Concerning ED visits within the last 6 months, all HRQoL domain scores were statistically higher among those with lower ED visits (1–3 times) and lower with an increasing number of ED visits. Statistical significant associations were noticed with all HRQOL-36 domains. In a previous Saudi study, it was found that poor QoL tends to increase the rate of SCD-related ED visits.5
It was apparent in the present study that as the number of painful episodes increased the HRQoL domain scores decreased (p ≤ 0.001), which was predicted by the regression model, where less number of painful episodes significantly predicts all the HRQoL domain scores. This is consistent with what Aljaouni reported; the HRQoL scores significantly decreased as pain levels increased. 17 Pain is the most common complication of SCD, and the commonest reason for SCD-related emergency or hospital visits, as seen in our study where unspecified pain was the most common reason for visits to the ED (60.7%), and nearly one-fifth (19.1%) of our SCD patients exhibited more than six episodes of pain within the past 6 months.
In regard to barriers of health care accessibility adults with SCD whom they were challenged by dealing with their constant fatigue and SCD painful episodes they exhibit and their avoidance to receive the health care due to their feeling of stigma and negative perception of others' judgment, in addition to how the family, friends and public view SCD patients as being fragile frail and symptom faking.19 These stigmas that happen in the healthcare settings, make it more difficult for SCD patients to get the care and the support they need.7,8 In our study, nearly half of adults with SCD agreed feeling stigmatized by the community due to unexpected episodes of pain, 43% of them agreed there is weakness in communications with healthcare staff and nearly third of our participants agreed about weakness in services provided by healthcare staff, Whereas in Kanter et al study the majority of the study respondents noted satisfaction with their usual care physician and were less pleased with their ED care than their usual care clinician, with approximately half being satisfied with or perceiving having adequate quality care in the ED, they also reported that when they experienced severe pain or clinician lack of empathy, this was associated with negative quality of care.20 With regard to the bivariate analysis, patients with a negative opinion regarding access to service provisions had significantly lower HRQoL scores in all domains, confirmed by the regression model for RE and MH. As such, empowering and counselling patients are exceptionally important to change their attitudes toward their disease and, hence, have better perceptions of their HRQoL. Despite the efforts made by the government to detain this inherited disease, such as the premarital screening program and free genetic counselling, which helped to effectively reduce the incidence of this disease, additional effective programs are still needed to improve healthcare access.21 Extensive training for healthcare providers concerning SCD and implementation of broad, social programs to raise awareness within the community will help overcome the SCD-related service barriers and improve their HRQoL.
Although this study is the first to be conducted in the region, it has some limitations. First, as a result of Covid-19 restrictions during the data collecting period, such as converting clinics to virtual, the sample size was small and only included hematology clinics, which does not represent the entire SCD patients' ED visits. Second, QoL is a subjective issue that is regarded differently by each individual, which could result in self-reported bias.