Quality of life of type 2 diabetes mellitus patients in Ramallah and al-Bireh Governorate–Palestine: a part of the Palestinian diabetes complications and control study (PDCCS)

Diabetes mellitus is of significant public health concern as it has dramatically risen in prevalence and has enduring complications on patients and their quality of life. In the Global Burden of Disease Study 2017, it was estimated that worldwide about 476 million people live with diabetes mellitus, of whom 463 million live with type 2 diabetes mellitus [1]. People in the Middle East and Palestine face an increasing prevalence of diabetes [2]. Based on estimates using 88 papers, including T2DM papers published between 1980 and 2015 from Arab states, the mean prevalence was estimated at 16.2% [3]. In Palestine, the prevalence is projected to increase from 18.4% in 2015 to 21.5% in 2030 [2]. Palestine is in epidemiological transition with diabetes emerging as one of the leading causes of morbidity and mortality in the region [4, 5]. Diabetes mellitus has increased from the 10th ranking cause of all deaths in 2005 to the 5th ranking cause of all deaths in 2018 [6, 7].

Diabetes is a metabolic disorder associated with chronic hyperglycemia that puts patients at risk of micro- and macrovascular complications, which may lead to high morbidity and mortality [8]. Clinical presentation, disease progression, and disease management vary from patient to patient considerably. However, it is important to underline that all patients experience a substantial impact on the different aspects of life. To live with T2DM means that one has to manage a lifelong disease every day by eating a healthy diet, being physically active, quitting smoking, visiting the doctor regularly for check-ups, monitoring blood glucose levels, and taking medicines if prescribed. This commitment to diabetes self-management may constrain patients’ life which could be a burden to one’s emotional and social wellbeing as well as to one’s economic status as prescribed medicines and regular doctor check-ups cost money and interrupt work routines. Beyond this, another burden to social and emotional wellbeing could be physical impairments due to T2DM such as pain, amputation and loss of vision. Currently, there is no universally accepted definition of quality of life to measure the social and emotional wellbeing as it is a multidimensional, subjective, and dynamic construct [9]. In simple terms, it is an individual evaluation of how good or bad one’s life is, which is subject to change and influenced by various factors [9].

A study on 1008 Palestinians involving 53% ‘healthy’ participants from the general population and 47% of patients drawn from health services indicated that the Quality of Life (QoL) is significantly worse in Palestine among healthy participants and patients compared to other countries as nearly 26% of the population in the occupied Palestinian territory reported ‘poor’ or ‘very poor’ QoL, compared to roughly 11% of the pooled population in the WHO International Field Trial, including all countries [10]. The authors pointed at the entrenched political conflict and chronic exposure to generational violence as the potential cause for the low QoL among the Palestinian population. Men, older adults, and those less educated showed to be affected the most compared to their counterparts. The authors proposed that a deeper understanding of QoL determinants is needed to fully elucidate the impact of the deep-rooted conflict on the wellbeing of people in Palestine [10]. Another study on Palestinian patients with T2DM (n = 385) using the Arab version of European Quality of life scale found that older age, being unemployed, and presence of comorbidities were associated to lower health-related QoL and suggested in order to improve QoL more attention should be placed on the elderly’s health and economic status [11]. The Audit of Diabetes-Dependent Quality of Life questionnaire (ADDQoL) is a disease-specific instrument that reacts more sensitively to subtle changes and may elucidate differences between subgroups [9, 12, 13]. The ADDQoL is the most frequently translated and widely used diabetes-specific QoL measure [13]. Thus, it allows a comparison to various countries. Two systematic reviews elucidated good psychometric properties of the ADDQoL [9, 13]. The questionnaire encourages patients to evaluate the impact of diabetes on different domains of their life, i.e. enjoyment of food, work-life, personal relationships, and physical appearance. Additionally, the patients assign every life domain importance and choose for selected domains ‘non-applicable’. Therefore, the ADDQoL is based on aspects of life that are of relevance to the patients. This paper is part of the Palestinian Diabetes Complications and Control Study (PDCCS) [14] and aims to investigate the quality of life among Palestinians with T2DM in Ramallah and al-Bireh as well as associated demographic and clinical risk factors using the ADDQoL.

This study showed that a considerable proportion of patients with T2DM believed that T2DM had a negative impact on their quality of life. The results were compatible with a case–control study from Gaza in which diabetics expressed a poorer health-related quality of life than their healthy controls living in the same conditions [30]. Almost three-quarters of the patients in Ramallah and El-Bireh stated that their QoL would be better without diabetes. Similar percentages were found in a multinational study, including 5813 individuals conducted in nine different countries (Belgium, France, Germany, Greece, Italy, the Netherlands, Spain, Turkey, and the U.K.) [18]. The average weighted impact was −3.38. This AWI score was generally lower compared to those in other settings [19, 20, 28, 31‐33], and it also differed significantly from the AWI (−1.69, p < 0.001) obtained in the multinational study [18]. This concurred with findings of a study that showed that the QoL of the Palestinian population ranked considerably lower than populations of the 17 pooled WHO International Field Trial countries using the WHO QoL questionnaire [10]. The difference in QoL could be explained by the protracted conflict, which reduces standards of diabetes care as well as limits the accessibility and affordability of medications [34].

It was observed that the life domain freedom to eat is adversely affected the most by T2DM. This is supported by other studies [12, 18‐26, 28, 29, 32, 35]. In order to improve quality of life, diabetes management programs should focus on diet. This might include involving nutritionists more closely as they could give person-centered advice on diet. Critically, it is likely that this improves quality of life as patients has had a better AWI outcome if they had more information on T2DM. The aim of such diet programs should be to strengthen patient’s own capability to master challenges of the disease and to motivate the patient to make healthy choices.

The physical activity life domain was the second most adversely affected by T2DM. The relatively large perceived negative impact is only found in one other study using the ADDQoL-19 [29] and two studies using the ADDQoL-13 [12, 22]. Physical activity is an important preventive measure for disease progression as well as disease complications since it improves HbA1 control, lowers cardiovascular risk factors, is beneficial for weight loss, and improves overall wellbeing [36]. Diabetes management programs in Palestine should encourage physical activity and its long-lasting benefits in addition to healthy eating. This is also supported by authors of a study conducted in the West Bank, Palestine that compares five future policy scenarios for diabetes prevention. They concluded that diabetes can be largely prevented by policy interventions focusing on obesity reduction [2]. These interventions should be setting specific as cultural beliefs, lack of parks and walking areas play an important role against practising physical activity among Palestinians and this becomes exaggerated among diabetics (i.e. feeling uncomfortable due to polyuria).

Besides the freedom to eat and physical activity, people in Ramallah and El-Bireh expressed that their working life was impacted by diabetes greatly negatively as well. The people in Singapore also expressed that their working life was also considerably negatively impacted by diabetes [24]. Authors suggested that regular doctors visits interrupt work routines. Beyond this, sudden flare-ups of the disease might be interfering and discouraging. Work-life provided the ‘non-applicable’-option in the ADDQoL questionnaire. This option was used by roughly two-thirds of the study participants. The reason for the high non-response rate in this domain might be that two-thirds of the study sample were women. In contrast, the working force participation rate of females above 15 years in Ramallah and El-Bireh is estimated to be only 11.8% [37]. Sex life had a non-response rate of 34.9%; this could be due to the cultural sensitivity of the topic.

A lower AWI score was associated with a worse diabetes-dependent QoL overview item. This coincided with findings from three other studies that the AWI is correlated more highly to the diabetes-dependent items than to the general QoL items [12, 18, 29].

Based on results of the regression analysis it was obtained that a lower QoL was associated with being male. In the QoL case–control study from Gaza, females showed lower QoL while in the general health-related QoL study from West Bank and Gaza, males showed lower QoL [10, 30]. Furthermore, there was an association between longer duration of diabetes and lower quality of life. Similar results that diabetes progresses over time were found elsewhere [22, 24, 25]. Duration of diabetes confounded the association of currently taking insulin negatively. Thus, the effect of taking insulin on AWI in the full model might be underestimated. On the predictor insulin, various studies showed that insulin treatment was associated with a more negative impact on QoL [18‐27]. This perceived low QoL might be explained by the findings of a qualitative study from Jordan. T2DM patients considered insulin as the last means to treat diabetes and expressed fear of painful injections, which affects adherence. Authors associated taking insulin with complications and a later stage of the disease [38]. On complications, there was evidence that having complications lowers the quality of life [12, 18, 20, 21, 26, 28, 29]. This was not shown in this study. A review including patients with diabetes of Arab and Bedouin origin in ‘Israel’, yet, also found evidence of high rates of hospitalizations and micro and macrovascular complications. Beyond this, the review stated that financially difficulties are frequently expressed as cause for inadequate healthcare and consequent complications [39]. Another study stated that high numbers of patients, insufficient staff training, and inadequate infrastructure are the main impediments to the proper management of diabetes in Palestine. These authors recommended to standardize the different guidelines and have a comprehensive approach to management with provision of training for healthcare providers with respect to patient education and an improved system for keeping records of patients [40].

This study has the following limitations. Firstly, the study design was cross-sectional; thus, no temporality could be established. Secondly, participants were only recruited from primary healthcare clinics, not also from private clinics and households; hence, severe and bedridden cases might be underrepresented. Including this patient group, the QoL might be poorer. Thirdly, self-reported data, for instance, smoking habits, and physical activity could be subject to recall bias. Lastly, there was no full response of all 494 participants to the ADDQOL questionnaire. Despite these limitations, this study led to valuable insights into the impact of T2DM on quality of life in a population experiencing conflict and health care instabilities on a daily basis.

T2DM patients from Ramallah and El-Bireh experienced diabetes as having a negative impact on their quality of life. Patients reported major constraints in food choices, physical activities, and work-life. They experienced a further decrease in quality of life if they had diabetes for a prolonged duration. These findings identified the demand for diabetes management programs tailored to the patients’ needs. Poor quality of life is not the only consequence of patient mismanagement but a challenge for health care organizations and governments to provide person-centered diabetes management according to International Guidelines on diabetes care [41]. For this, it might be useful to assess patients’ diabetes associated quality of life score as an outcome measure in order to motivate and enhance diabetes management and establish health policies that put patients at the center of diabetes care.