A systematic literature review of the assessment of treatment burden experienced by patients and their caregivers

Thirty-four of the 48 articles (70.8%) discussed treatment burden associated with specific conditions e.g. heart failure, cancer, cystic fibrosis with the remaining fourteen articles focusing on patients with multiple chronic conditions. Forty-six articles examined treatment burden experienced by patients and six discussed that experienced by caregivers. Three articles [17‐19] reviewed the qualitative literature on treatment burden and a chronic condition (stroke, heart failure, respiratory disease) and one article [20] reviewed it in persons with multiple chronic conditions. Quantitative assessment of treatment burden was reported in 30 studies and 18 articles described qualitative approaches.

Articles using qualitative analyses of focus group or semi-structured interview data identified the main dimensions of treatment burden experienced by patients [4, 17‐22], factors which increase burden [19, 20] and methods by which patients decrease burden [20, 23]. Treatment burden was present both in populations with one specific condition and in those experiencing multiple chronic conditions. In the stroke and heart failure populations the four main dimensions of treatment burden identified through the qualitative literature were coherence (understanding the condition and its implications), treatment and management, appraisal (juggling, monitoring and adjusting treatments) and relationship work (efforts to engage with health professionals, family and patients for help and support) [17, 21]. Table 1.

Specific conditions generated specific burdens, for example, patients with percutaneous endoscopic gastrostomies were most burdened by lifestyle restrictions and practical limitations [31]. The anxiety of receiving intravitreal injections was a source of treatment related burden in macular degeneration [23]. Patients with lung cancer and COPD reported reduced capacity to manage workload due to illness/smoking-related stigma [19]. Many people described the burden of educating themselves about their disease and learning how to self-manage their condition [19, 27, 30, 32]. Patients with chronic conditions and their unpaid caregivers felt that financial burden was the most problematic for them but also felt burdened by time and travel issues, medications and healthcare access [20, 22, 23, 25]. Many treatment related burdens described in relation to a specific condition could also apply to other conditions, for example, multiple myeloma treatment which led to a substantial psychological and physical burden on patients disrupting social activities, decreasing independence and impacting relationships [33].

One group used the Instrument for Patient Capacity Assessment (ICAN) discussion aid during the physician encounter to promote discussion in order to understand patient capacity, workload, and treatment burden [26]. One of the questions in the aid asks “What are the things that your doctors or clinic have asked you to do to care for your health?” Examples are given and patients are asked “Do you feel that they are a help, a burden, or both?”

Treatment burden was increased by polypharmacy, multimorbidity, reduced physical, financial and cognitive capacity, barriers to accessing services, fragmented and poorly organized care, lack of continuity of care and inadequate communication between healthcare professionals [19‐21]. The same burden was decreased in people with multiple chronic conditions by using problem or emotion focused strategies (e.g. technology, routinizing self-care, enlisting support, maintaining a positive attitude, spirituality), adaptation, prioritization, receiving social support and identifying the positive aspects of health care [20, 24]. Capacity to manage treatment burden was influenced by personal attributes and skills, physical and cognitive abilities, support network, financial status, life workload and environment [32]. Patient preferences were variable based on the substantial differences within the population studied regarding willingness to undergo more or less burdensome therapies [28]. When preferences were tracked over time participants became less willing to endure a high burden of therapy to avoid death [29]. Concern about cognitive disability also rose with time, with participants becoming less willing to accept even low risks of cognitive disability when receiving treatments aimed to prolong life [34].

Many instruments and measures used to assess treatment burden were disease-specific (e.g. the Quality of Life-Bronchiectasis (QOL-B) questionnaire [35], the Dermatology Life Quality Index [36] or the Diabetic Treatment Burden Questionnaire [37]). In general, these instruments assessed treatment burden as part of longer quality of life questionnaires [33, 36‐39]. Studies describing disease-specific assessments of treatment burden tended to be in younger populations and the conditions studied required specific and time-consuming interventions on the part of the patient e.g. applying creams in psoriasis, respiratory treatments in cystic fibrosis or dietary restrictions in celiac disease. Three studies in cancer patients receiving short term intensive chemotherapy and radiotherapy sessions used number of treatment episodes [40], number of encounter days and number of physicians involved in care [41] as surrogate markers of treatment burden. Polypharmacy was also used as a surrogate marker of treatment burden in stroke and cancer patients [41, 42] where a higher number of medications indicated increased burden of treatment. Open ended questions or linear analog indicators of burden were also used by some groups [43‐45] with questions such as “Overall, how much are you bothered by any treatment related difficulties” or “the treatment so far was…” with responses ranging from not burdensome [1] to extremely burdensome [10].

Twelve studies described the assessment of treatment burden in patients with multiple chronic conditions. A variety of assessment tools were used with each reflecting the complexity of managing multiple chronic conditions by asking about many aspects of burden. Despite this shared purpose, these assessment instruments varied in content and length. Five studies used the Treatment Burden Questionnaire (TBQ) which rates fifteen items which may be associated with treatment burden on a 0–10 scale [11, 46‐49]. The Multimorbidity Treatment Burden Questionnaire (MTBQ) is a concise (10 item) measure of treatment burden designed specifically for patients with multimorbidity [50]. The authors recommend its use in clinical practice to highlight specific problem areas for patients with multimorbidity such as problems with medications or lifestyle changes. The Willingness to Accept Life-Sustaining Treatment (WALT) instrument was used to examine, among other things, how treatment burden and treatment outcomes influence patient preferences across a wide range of chronic conditions [34]. Another group used a 78-item measure, the Patient Experience with Treatment and Self-management (PETS) measure. This explores many aspects of treatment burden including learning about health conditions, medications, appointments, monitoring health, exercise, diet, equipment, interpersonal challenges, expenses, healthcare providers, difficulty with services, social limitations, and exhaustion [51]. The Living with Medicines Questionnaire uses a Likert scale to rate 41 questions covering eight domains of medication burden [52]. Exercise is recommended as part of the management of many chronic conditions and its burden can be measured using the 10-item Exercise Therapy Burden Questionnaire [53]. The Health Care Task Difficulty (HCTD) scale assesses 8 different health care tasks [54]. The National Health and Aging Trends Study (NHATS) brief measure of treatment burden fielded in 2012 asked participants to reflect on the things they are asked to do to stay healthy or treat health problems (e.g. managing medicines, getting tests done, watching weight and blood pressure) [55, 56]. Some measures initially developed for chronic conditions were later adapted for specific conditions e.g. PETS for the diabetic population [57]. Additional detail on the instruments used to assess treatment burden are in Table 2 and Additional file 1.

Six studies described assessing treatment burden experienced by caregivers through qualitative interview [19, 22, 25] and assessment tools (HCTD, TBQ) [7, 56] and survey [56]. Giovannetti used the HCTD scale to describe caregiver’s difficulty in assisting multimorbid older adults with eight health care tasks and found that difficulty increased with both advancing age of the caregiver and the number of healthcare tasks for which they were providing assistance [7]. Higher HCTD scores were associated with increased caregiver strain and depressive symptoms. Representatives from consumer health organizations representing individuals with chronic conditions highlighted the frustration and distress experienced by caregivers from treatment burden, citing examples of social isolation, deteriorating health, self-neglect, lack of support and marginalization resulting from the burden of their family member’s treatment [22]. In a study of individuals with chronic conditions and their caregivers [25], financial burden was the most widely discussed burden arising from treatment of chronic illness even in the Australian setting with federally provided universal health care. Caregivers described feelings of guilt caused by prioritizing the cost of medication over the broader needs of their family. Travelling with the person they cared for to access health services was also reported to be particularly burdensome for caregivers, mainly due to the logistics of transportation and parking falling to them. The importance of financial burden was echoed in recent studies on patient reported treatment burden in both Australia [27] and also in fee for service systems such as the United States where the burden is likely to be even higher [20].

In another study of the treatment burden experienced by people with chronic conditions [56] a quarter of participants with chronic conditions were also unpaid caregivers to another individual with a chronic condition. In this NHATS population having an unpaid caregiver predicted a substantial increase in patient reported treatment burden, however, being both a patient and carer did not have an effect on treatment burden. The authors hypothesized that this seemingly paradoxical effect could potentially be due to the differing psychological effects with care recipients experiencing feelings of guilt for burdening a family member while caregivers may feel a sense of self-worth and satisfaction while caring for a loved one. Other studies [19] also referred to the positive effects of caregiving describing caregiver participation in the treatment workload as practically onerous but an affirmation of the strength of the caregiver’s relationship with the patient. Despite this many caregivers reported feeling compelled to take on a caregiving role and described balancing treatment workload with their everyday life as being extremely demanding and limiting.