Room for improvement in non-pharmacological systemic sclerosis care? — a cross-sectional online survey of 650 patients

Abstract

Background/ objective To gain insight in the use of current systemic sclerosis (SSc) care provided by health professionals from the patient perspective. We focused on referral reasons, treatment goals, the alignment with unmet care needs, and outcome satisfaction. Methods Dutch SSc patients from 13 participating rheumatology departments were invited to complete an online survey. Descriptive statistics were used to describe current use of non-pharmacological care and outcome satisfaction. Reasons for referral and treatment goals were encoded in International Classification of Function and Disability (ICF) terms. Results We included 650 patients (mean (standard deviation [SD]) age, 59.4 (11.4) years. 50% had contact with a health professional in the past year; 76.3% since disease onset. Physiotherapists were the most frequently visited in the past year (40.0%), followed by dental hygienists (11.4%) and podiatrists (9.2%). The three most common referral reasons were pain, joint mobility and cardiovascular functions. Fatigue, Raynaud’s phenomenon, physical limitations, reduced hand function and joint problems were mentioned by more than 25% of all respondents as unmet needs. The proportion of patients treated in the past year by a health professional who were satisfied with knowledge and expertise of their health professionals was 74.4%; 73% reported improved daily activities and better coping with complaints. However, 48.9% perceived that the collaboration between rheumatologist and health professional was never or only sometimes sufficient. Conclusion Despite the high outcome satisfaction and good accessibility of health professionals, there are obstacles in the access to non-pharmacological care and communication barriers between health professionals and rheumatologists.

Evidence and consensus-based recommendations for non-pharmacological treatment of fatigue, hand function loss, Raynaud’s phenomenon and digital ulcers in patients with systemic sclerosis

“…In clinical practice, the HPR treatment offer varies, as well as the content of the treatments, and there is little evidence available regarding HPR treatment for SSc-induced fatigue, hand function loss and RP/DU thus far [ 17–19 ]. Although HPRs offer numerous treatments to satisfy the unmet care needs of patients with SSc, and these patients are satisfied with the content and results of HPR treatments, fatigue, hand function loss and RP are uncommon reasons for referral to HPRs [ 18 , 20 , 21 ]. In a previous study, we found that rheumatologists are reluctant to refer their patients to HPRs due to a poor overview of HPR treatment options and a lack of published evidence [ 22 ].…”

Physical therapy in patients with systemic sclerosis: physical therapists’ perspectives on current delivery and educational needs

“…This is also the case for systemic sclerosis (SSc), a rare, chronic autoimmune disease with multiorgan involvement (5). Physical therapists are among the most frequently visited health professionals in SSc, with the proportion of SSc patients visiting a physical therapist during 1 year ranging between 37% and 58% (6)(7)(8)(9). In the literature, SSc patients have expressed the need for improvement of non-pharmacological care, including physical therapy (10,11).…”

Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study

“…Thus, improving healthcare provider competencies in shared decision-making is a key target for effectively implementing integrated SSc care [ 63 , 64 ]. Stocker et al [ 17 ] highlighted the need for patient decision aids to foster more patient-focused communication and support high quality decisions that are both informed and aligned with patient needs, values and preferences. Furthermore, our study revealed that patients may feel strained by too much, untimely or frightening information and may therefore refuse certain tests, examinations or interventions.…”

“…Congruently, our interview participants described ‘ relying on an accessible and trustworthy team ’ as a central theme relating to finding trusted, reliable professionals and peers for ongoing care and support. Several studies have revealed similar gaps in SSc care delivery (i.e., lack of structured multidisciplinary collaboration, inadequately organized follow-up, poor patient-provider relationships [ 17 , 59 , 66 – 68 ]. Despite the positive impact the chronic care model has demonstrated on disease outcomes, rare disease care models rarely test multi-component interventions (e.g., patient education, patient-held medical records, specialist nurse-led care) in providing coordinated, ongoing, complex care [ 32 , 69 ] and infrequently incorporate community-based resources [ 70 , 71 ].…”

“…Numerous studies report severely impaired physical and psychological HRQoL in SSc [ 10 – 13 ]. Importantly, the heterogeneous disease presentation and the symptom burden of patients living with SSc necessitate a chronic care approach including competent, coordinated, multidisciplinary collaboration as well as self-management support targeting individual patient needs [ 14 – 17 ]. However, prevailing models of SSc care mainly focus on acute health problems and often lack an integrated approach that addresses the complex care needs of patients [ 18 , 19 ].…”