A qualitative research study on the illness perception of chronic pruritus in older Asian adults based on the Common‐Sense Model of self‐regulation

Abstract Background Chronic pruritus (CP), itch lasting more than 6 weeks, is common in community‐dwelling older adults. Understanding their illness perception allows the attending physician to develop a personalised care plan to mitigate CP. Aim This study explores the illness perception of CP among older Asian adults in an urban community. Design Qualitative research was conducted, framed by the Common‐Sense Model of self‐regulation (CSM). Through in‐depth interviews (IDIs), qualitative data were gathered from Asian patients with CP, and then a thematic analysis was carried out. The emergent themes were grouped according to the five domains of CSM: ‘identity’, ‘cause’, ‘time’, ‘controllability’ and ‘consequence’. Setting and Patients IDIs were conducted in a Singapore public primary care clinic before the data were saturated. Results The CSM domains illustrate the illness perception of CP. CP was identified as a ‘problem’ rather than a disease and was often described in metaphor. Patients' perception of the cause was diverse due to the lack of provision of a clear explanation by their physicians. They opined that CP continued indefinitely. Without definite time to resolution, patients adapted their help‐ and health‐seeking behaviours to control it. The consequences included therapeutic experimentation, alternative therapy, self‐isolation, avoidance behaviours, emotional disturbance and dermatological complications. Conclusion and Patient Contribution Patients provided information on their perception of CP, which aligned with the CSM. A multipronged approach is needed to deliver holistic and personalised care to patients with CP, providing clarity on its natural progression, to set their expectations on its timeline, treatment effectiveness and undertake appropriate behaviour modification to adapt to its chronicity.


| BACKGROUND
Rapidly ageing populations are emerging in selected developed communities globally. Singapore is an example and is expected to have the ninth largest share of older persons in the general population by the year 2050. 1 Older persons are defined as those aged 65 years and above. 2 Ageing often leads to drying of the skin and changes in cutaneous nerve fibres. Older persons often have associated polypharmacy and multiple medical comorbidities. These constitute additional risk factors for itch or pruritus in these older persons. 3 Pruritus is the most frequent cutaneous complaint in the geriatric population. 4 It is a subjective symptom, which many older persons struggle to convey to others effectively. 5 The causes are usually multifactorial and often misunderstood. Sommer et al. 6 reported that 44.5% of patients had no specific single disease identified as the cause of their pruritus. Among these patients, mainly those aged above 65 years, multiple factors are likely to underpin their pruritus. 6 This makes it more challenging to diagnose and treat the condition and leaves the patient unsatisfied. The Global Burden of Disease Study 2010 7 reports a high prevalence of skin disease in persons older than 70 years of age, with pruritus being one of the top 50 interdisciplinary symptoms. The severity and chronicity of pruritus are significantly associated with poor sleep quality, more depressive symptoms, higher anxiety levels, more nonspecific somatic symptoms and impaired quality of life (QOL). [8][9][10][11][12] Poor understanding of the cause and chronicity of CP may drive the patient to seek temporary symptomatic relief rather than regular preventive management of the condition. This is evident in other chronic diseases with periodical acute exacerbations such as asthma, with the disease pattern similar to that of CP. 13 Chronic pruritus (CP) is defined as pruritus that persists for more than 6 weeks. 14 The prevalence of CP increases with age. [15][16][17][18] Liao et al. 16 showed that patients aged 65 years and older had a threefold increased risk of pruritus than those aged younger than 65 years. Ständer et al. 15 found that the prevalence of CP increased with age from 12.3% (16-30 years) to 20.3% (61-70 years). The prevalence of pruritus in an inpatient geriatric patient population in Singapore is reported to be 48.5%, but its prevalence in the local community-dwelling older adults has not been established. 9 The impact of CP on daily life can be significant. 12,[19][20][21] shown to cause sleep disruption in 35.1% of older inpatients in a local tertiary hospital, while 30.9% reported difficulty concentrating on their daily activities. 9 The impact of CP on the QOL is comparable to that of chronic pain, with the average patient willing to forfeit 13% of his or her life expectancy to live without the pruritus symptoms. 22 The treatment of CP becomes critical in optimising the mental health and QOL of patients, but it remains challenging in clinical practice. 23 Most local patients with CP are treated with sedating antihistamines, which increase their fall risks. [24][25][26] Nonsedating antihistamines have a better risk and tolerability profile, but long-term use is necessary to curb the symptoms, adding to the pill burden of the older patients. 27 Prolonged symptomatic treatment leaves the patient unsatisfied as it fails to address the root of the condition.
Symptom recurrence often leads to frequent doctor changes, adding to the healthcare cost. 5 Frustrations with the treatment invariably affect their health-seeking behaviour. Self-treatment with over-thecounter medications, including the use of traditional medicated oils or powders to relieve their symptoms, is common among local patients with pruritus. 9 Many of them rub or scratch the areas of pruritus, resulting in excoriations, or resort to frequent washing of the site to find transient relief. 20 Many change their eating habits and adopt special diets to relieve their pruritus. 24 These general measures, such as avoiding certain climates, topical irritants, diet and regular use of moisturisers, night creams in addition to relaxation therapy and educational programmes, has been shown to be effective in mitigating CP. 28 Many studies demonstrate the effectiveness of regular emollients and moisturisers in managing pruritus with the need for symptomatic treatment during exacerbations. 23,29 A lack of understanding of the disease or the importance of treatment makes patients less likely to adhere to such a regime. 30,31 Dermatological conditions can be effectively controlled if patients understand the disease mechanism, trigger avoidance and follow proper skincare.
Assessment of patients' perspectives to develop a baseline for education, evaluate motivation and ensure a complete understanding of the necessity for treatment has been reported to be important in previous studies of dermatological conditions. 32,33 Most conditions in dermatology have the advantage of patients directly observing the effects of treatment in terms of symptom relief or aggravation or status quo. Hence, the experience of following the treatment provides a feedback loop to reinforce illness and treatment perception. Thus, focusing the communication with the patient on their perceived illness and treatment and rectifying misbeliefs with evidence-based information are relevant measures in managing CP. This approach may enable the patients to adapt their self-care behaviour accordingly. 34 Therefore, illness and treatment perception influence behavioural response, leading to harm if not managed prudently. Bathe et al. 5 explored the illness perception of patients with CP in a German dermatological referral clinic. They reported that patients with CP feel misunderstood, as the latter struggle to describe their symptoms.
These patients feel that their health professionals are insensitive to their illness burden. Invariably, some of them resort to consulting multiple doctors to seek clarification on their persistent symptoms.
Others switch to complementary and alternative treatment modalities in a futile attempt to seek definitive therapy for CP.

| Research design
Qualitative descriptive research is deployed to explore patients' illness perception of pruritus, as it is subjective and likely multidimensional. In-depth interviews (IDIs) were conducted to collect the qualitative data pertaining to their experiences and the effect of CP on their activities of daily living.

| Theoretical framework
CSM seems to be best suited to frame the study. 36 This framework provides a comprehensive understanding of patients' perspectives of CP, covering their recognition of the illness (identity), aetiology perception (causes), belief of the illness duration (timeline), attributed outcomes (consequence) and observed treatment effects (controllability).

| Study population
The study population comprised multi-ethnic Asian patients aged 65 years and older, who were invited to participate in the study if they could speak any local major languages. They self-reported having experienced pruritus for longer than 6 weeks, regardless of aetiology and severity, with or without primary skin lesions or underlying disease.
Those with physician-diagnosed dementia, visual or auditory impairment and unable to provide written consent were excluded.

| Recruitment procedure
Purposive sampling was carried out to recruit eligible patients from December 2019 till February 2021. Recruitment was suspended in February 2020 due to restrictions imposed during the COVID-19 pandemic and resumed after approval from the institution in August 2020. Primary care physicians and healthcare workers at the study site were engaged to help identify suitable patients based on eligibility criteria. All potential patients provided verbal consent to share their contact details with the research team. The study team members subsequently contacted them to schedule face-to-face or phone interviews. Recruitment continued until data saturation was reached when no new themes emerged. 40

| Consent-taking procedure
Informed written consent was obtained from patients before the interviews, which were conducted in a quiet room to ensure privacy.
The patients read the study information sheet, consent form and topic guide before the interview. The documents were in English and were translated by a study team member for non-English-literate patients in a language and in layman terms so that they understood the nature of the study. A study team member addressed their queries before their consent endorsement.

| Topic guide
A pilot topic guide was developed after literature review, discussion with the team members and keeping with the CSM framework. The pilot topic guide was reviewed and revised to create the final topic guide ( Table 1). The latter included questions on the description and perception of the cause of pruritus, the expected duration and impact of pruritus on their daily activities, emotions and health-seeking and self-care behaviour. Questions were phrased to be easily understood by the patients and medical jargon was avoided.

| Data collection and interview
The patients filled their demographic data before the face-to-face interviews or phone interviews, which was an additional approved option during the pandemic. Individual IDIs were conducted as personal and sensitive issues were expected to emerge, which were deemed inappropriate to share in group discussion.
The interviews, completed in 40-90 min, were audiorecorded using a digital Dictaphone with a microphone attachment. The patients were remunerated with an SGD20 (USD15) grocery voucher for their time and contribution to the study. The audio recordings were translated or transcribed verbatim by professional transcribers. The transcriptions were next audited by an independent researcher for accuracy. Each patient was assigned a unique study identity number to ensure confidentiality and anonymity.

| Coding and data analysis
Coding was carried out using an iterative approach. Three investigators coded the first three audited transcripts independently to generate an initial coding frame. Based on this initial coding frame, subsequent transcripts were coded by the first author using the software NVivo © version 12 (QRS Pty Ltd). The qualitative data were regularly discussed among the investigators and the codes were reviewed, revised and refined based on the theoretical framework to identify emerging themes.
The demographic data collection forms, audio recordings, transcripts, coding framework and codes were maintained in secure archives to establish a clear audit trail.

| FINDINGS
A total of 17 patients were approached and 13 consented to the study (response rate: 76.5%). The 13 IDIs consisted of 7 face-to-face and 6 telephone interviews. Those who declined participation cited time constraint, lack of interest or they felt they did not have valuable information to contribute. The patients' demographic characteristics are reported in Table 2. The results are presented according to the domains in the CSM. A summary and description of the themes are presented in Table 3.

| Problem described in metaphor
The patients struggled to identify and describe their symptoms, generally as an unpleasant sensation. They tended to use metaphor in their narration of their experience: 'I went for body massage. It's better, you know. The patch is not so big. After applying the medicine, the itchiness patch will be more spread out…it's better.

Less itch'. P1
'He (traditional physician) gives me some Chinese herbs. After I take the Chinese herbs, I feel okay, but The controllability also provides a context to frame the coping

| Strengths and limitations
This study illustrates the illness perception of Asian patients of CP as a matter of common sense in self-regulation. Use of the CSM re-

| CONCLUSION
This study yielded in-depth information on the domains of illness perception of Asian patients with CP and how patient-physician encounters drive the perception of this illness. They identified CP as a chronic, aversive problem with an unclear cause and infinite course, which impacted their daily lives and emotional well-being. These perceptions were perpetuated due to the lack of information provided by physicians, resulting in problem-focused or maladaptive behaviours. These conclusions emphasise the need for physicians and healthcare providers to rectify the illness perception, and educate and guide patients to adapt and adopt appropriate behaviours to mitigate adverse consequences.

CONFLICT OF INTERESTS
The authors declare that there are no conflict of interests.

AUTHOR CONTRIBUTIONS
The research team included three family physicians, one nurse and Moosa revised the draft several times before it was finalised. All investigators reviewed and approved the final manuscript before its journal submission.

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.