Evidence from more than 50 observational and qualitative studies on the experience and perceptions of people with osteoarthritis was summarized by the National Institute for Health and Clinical Excellence (NICE). Unsurprisingly, people with osteoarthritis most wanted improvements in pain management and mobility/functional ability, and help with maintaining an independent life in the community. Many people viewed their osteoarthritis symptoms as an inevitable part of getting old, or felt that they were expected to accept their disabilities as inevitable. Depression and anxiety were major problems. Social networks were important in coping with the consequences of osteoarthritis. Treatment decisions were often based on the ability of the person and their partner to cope as a couple. Many people had little, or inaccurate, knowledge of osteoarthritis, and they wanted more information about the condition, self help, and available treatment options. Many people had experienced difficulties in communicating with doctors and some were extremely dissatisfied with the service they had received.
Perceptions of body function and structure (symptoms)
- NICE found 10 observational and qualitative studies [National Collaborating Centre for Chronic Conditions, 2008].
- Pain, function, and negative feelings were important factors affecting the lives of people with osteoarthritis. People found their pain distressing, and that their osteoarthritis caused limitations and had a major impact on their daily life. The areas that caused major problems were pain, stiffness, fatigue, disability, depression, anxiety, and sleep disturbance.
Perceptions of activities and participation
- NICE found nine observational and qualitative studies [National Collaborating Centre for Chronic Conditions, 2008].
- Poor performance of tasks was associated with female gender, raised body mass index (BMI), pain, and pessimism. It was embarrassing to be unable to do things their peers could do, and distressing to be unable to participate in valued activities such as travel, leisure activities, social activities, close relationships, community mobility, employment, and heavy housework.
- Personal care activities were rarely mentioned.
- People with hip osteoarthritis had the worst work-ability scores.
- White-collar workers had significantly higher work ability than blue-collar workers, regardless of age.
Perceptions of psychosocial and personal factors: feeling old
Perceptions of psychosocial and personal factors: depression, anxiety, life satisfaction
- NICE found 11 observational and qualitative studies [National Collaborating Centre for Chronic Conditions, 2008].
- Older people with advanced osteoarthritis felt that the disease threatened their self-identity, they were overwhelmed by health and activity changes, and they felt powerless to change their situation.
- Depression and anxiety were major problems.
- Factors that were associated with depression, anxiety, and less life satisfaction included:
- Physical outcome measures.
- Pain.
- Lack of social support.
- Pessimism.
- Measures of depression, anxiety, and life satisfaction were worse in:
- People with osteoarthritis of the hip (compared with osteoarthritis of other joints).
- White collar workers (compared with blue collar workers).
- Men (compared with women).
Perceptions of psychosocial and personal factors: relationships
- NICE found three observational and qualitative studies [National Collaborating Centre for Chronic Conditions, 2008].
- Informal social networks (family, friends, and neighbours) helped with tasks, gave emotional support, helped keep people socially involved, and could support the idea that surgery is avoidable.
- Decisions on treatment were made on the basis of the coping ability of the couple, not just the coping ability of the partner disabled by osteoarthritis.
Perceptions of psychosocial and personal factors: knowledge of arthritis and its management
- NICE found six observational and qualitative studies [National Collaborating Centre for Chronic Conditions, 2008].
- Most people thought their osteoarthritis was a normal and inevitable result of hardship or hard work. However, younger respondents did not perceive their symptoms as being normal, and were more determined to get treatment.
- Many people had little knowledge of:
- The causes and outcome of osteoarthritis.
- Suitable forms of exercise.
- The benefits of lifestyle changes.
- Management of an acute episode.
- The aims of treatment with nonsteroidal anti-inflammatory drugs (NSAIDs) — many thought that NSAIDs would slow progression of their osteoarthritis.
- The adverse effects of treatment with NSAIDs and intra-articular corticosteroid injections.
- Aids and devices.
Perceptions of psychosocial and personal factors: expectations of treatment
Perceptions of psychosocial and personal factors: use of self-management methods
- NICE found five observational and qualitative studies [National Collaborating Centre for Chronic Conditions, 2008].
- Use of self-management methods was associated with more education, more social support, more symptoms, and more serious symptoms, but not with age or gender.
- People were embarrassed by their disabilities and felt stigmatized when using walking aids or wheelchairs.
- Many people used alternative therapies such as ginger, cod-liver oil, acupuncture, magnets, and others.
- People wanted more information about the condition, and about self help and available treatment options.
Perceptions of psychosocial and personal factors: treatment/healthcare
- NICE found seven observational and qualitative studies [National Collaborating Centre for Chronic Conditions, 2008].
- Perceptions of provision of treatment:
- Older people and women were more likely to rate their treatment as more helpful. People with higher occupational status were more likely to feel more negatively about their treatment.
- The longer the delay between the onset of symptoms and the diagnosis of osteoarthritis, the more difficult it was for people to deal with their symptoms.
- Younger people attributed delays in their diagnosis to healthcare professionals considering them too young to have osteoarthritis.
- The unpredictable nature and invisibility to others of symptoms were barriers to receiving support (noted mainly by younger people with osteoarthritis).
- People felt that there was a real lack of information and support given to them (by their GP and other primary care team members) about their condition, especially in the areas of managing pain and coping with daily activities. Obtaining information and more visits to the doctor were associated with reporting more symptoms and with believing treatment to be more helpful.
- Many people had experienced difficulties communicating with doctors and some were extremely dissatisfied with the service they had received. Common problems were:
- An inadequate supply of medications to last until their next GP appointment.
- Gastrointestinal (GI) problems.
- Barriers to attending the clinic (for example, finances, transportation).
- Barriers when rapid intervention was required.
- Several people noted that their family physician had never discussed surgery with them and they therefore assumed that surgery was not possible. Where surgery had been mentioned by healthcare professionals it was often described as a last resort.
- Perceptions of surgery:
- Employed younger respondents had all paid for private referrals to specialists and had all undergone, or were being considered for, total joint replacement surgery.
- Perceptions of drugs:
- Drugs were seen as helpful by many people.
- However, many people were unwilling to use medication because they thought medication would mask (rather than cure) symptoms, and would have adverse effects.
- Perceptions of aids to daily living:
- Canes were perceived as useful but some people felt too embarrassed to use them.
- Perceptions of physiotherapy and exercise:
- Physiotherapy and regular exercise were seen as beneficial treatments.