Determinants of resilience in patients with rheumatic disorders

Abstract

Introduction

Rheumatic disease is an autoimmune disorder with an unpredictable course of

exacerbation and remission. There is no known cure for the disease at the moment.

The patients’ conditions may progressively deteriorate despite intensive therapies, and

runs an erratic course with the possibility of disfiguration and alteration in body

image. Pain, disabilities and psychological distress are common. Rheumatic patients

may respond differently to the same level of pain and physical symptoms. The

understanding of the needs of rheumatic patients and how they successfully manage

the disease and optimize psychological adjustment can help develop effective

psychosocial interventions.

Aims

The aims of the study are (1) to identify the needs of rheumatic patients and

perceptions of their disease, (2) to develop a conceptual framework for psychological

adjustment, and (3) to identify factors associated with resilience in rheumatic patients.

Methods

The present study consisted of two phases. The first phase was a focus group

interview, aiming to understand the patients’ feelings and to design a questionnaire.

The second phase was a prospective questionnaire survey that includes a baseline

study and a six-month follow-up study. Patients were recruited from support groups in

Hong Kong. The baseline questionnaire was self-administrated, and the follow-up

questionnaire was administrated by telephone interview. The self-regulation model

was chosen as the basis for the conceptual framework for psychological adjustment.

The questionnaire included demographics, illness representation, coping efforts,

appraisal of coping efforts, sense of coherence, quality of care, functional disability,

and health-related quality of life. The outcome measures were functional and

psychological health, change in adjustment, and positive and negative resilience.

Results

Having a good and caring doctor, more information on the disease, and public

understanding of the disease were the needs of rheumatic patients. The patients

perceived that the disease was chronic, cyclical, and had poor consequences. They

perceived that the disease caused great pain, stress, depression and anxiety, and

affected their daily activities, appearance, and relationship with family and friends.

Poor adjustment was associated with chronic and cyclical timeline, and poor

perception of personal and treatment control. The analysis of resilience shows that

positive perception of treatment control and disease consequence, correct

understanding of disease causes, and high sense of own value and importance to the

society, were protective. While those who lacked family support and blamed

themselves or their families to be the cause of disease, were vulnerable.

Discussion and conclusions

The present study lends support to the validity of self-regulation model in

psychological adjustment to disease, but coping efforts could only partially mediate

the relationship of illness representation to appraisal of coping efforts, implying that

the coping style might not sufficiently capture the underlying differences in individual

coping styles. An effective psychosocial intervention can be developed based on the

factors associated with better adjustment and resilience, and targeted at non-working

older patients with rheumatoid arthritis. Last but not least, support from the

community, and public understanding of the disease are important for rheumatic

patients.