|
| No. | Author, Year, Country, Discipline, Design | Aim | Informants, Population | Data, Measures | Findings, Results | Author conclusion and discussion |
|
| [37] | Wahl et al., 2000.
Norway.
Nursing.
Cross-sectional.
| To assess health-related quality of life among patients with psoriasis and to compare these estimates with population norms. | 283 patients treated at 3 dermatology departments in the eastern part of Norway.
Gender: 57% M, 43% F.
Mean age: 47 years.
Control subjects 3.500 of the general. Norwegian population, mean age: 45 years. | Short Form 36 | After adjustments had been made according to age, gender, educational level and marital status, it was seen that psoriasis patients reported poorer health-related quality of life in all 8 conceptual domains compared to norms from the general Norwegian population. The largest difference was found on the role limitation scale—emotional scale.
| The burden of psoriasis is significant at the emotional life domain. This domain deals with problems in relation to work or other regular daily activities as a result of any emotional problems, such as feeling depressed or anxious.
The patients’ own assessments of symptoms specifically related to psoriasis are related to their evaluation of health-related quality of life. |
|
| [38] | Wahl et al., 2002.
Norway.
Nursing.
Qualitative.
| To present results from a qualitative study that focuses on patients with psoriasis, their experience of living with the disease, and its psychological and social impact. | 22 hospitalized patients with severe disease, that is, more than 30% of the body affected.
Gender: 10 M, 12 F.
Age: 20–80 years (majority 40–60 years).
Diagnosed with psoriasis for more than 3 years. | Transcribed interviews. | Bodily suffering emerged as the core category, with the following subcategories:
(i) The visible body
(ii) Social vulnerability
(iii) Staying on an even keel
(iv) An all-consuming disease
Many different aspects and nuances are related to the patients’ body experiences, for example, concern that their body seemed offensive, unclean, infectious, disgusting, leprous, ugly unattractive, strange or different.
The wish to keep the disease secret and to camouflage it is a very prominent aspect of living with psoriasis.
Feelings of despair, vulnerability and hopelessness are related to living with psoriasis.
Psoriasis can control every aspect of the patients’ lives. | Patients’ experience of living with psoriasis includes bodily suffering, changed self-image, the perception of being stigmatised, and social isolation.
For some people, the body can no longer support the positive social function.
Psoriasis is described as an enemy that saps the patients’ spark and energy during bad periods. |
|
| [39] | Fortune et al., 2002a.
United Kingdom.
Psychology.
Cross-sectional.
| To examine strategies for coping in patients with psoriasis and investigate whether they differ compared to normal controls and patients with other major medical diseases.
| 250 patients attending psoriasis specialty clinic at Hope Hospital. 27% with severe psoriasis.
Gender: 53% M, 47% F.
Age: 35–51 years.
60 healthy control participants.
Published COPE scores from other medical diseases. | PASI.
PDI.
COPE | Across medical conditions, patients showed remarkable similarity in the type of coping strategies used.
The most frequently used coping strategies were acceptance, planning, active coping and positive reinterpretation.
Patients with psoriasis were using social support strategies less frequently than controls.
| Illness brings with it a generic form of coping that requires shaping to fit the specific demands of specific illnesses like psoriasis.
Many of the difficulties experienced by patients with psoriasis are so demanding that they outstrip the coping resources of the patient, the family or social network.
More research is needed on how to make coping more efficacious and particularly on how the family may be assisted in this respect. |
|
| [40] | Fortune et al., 2002b.
United Kingdom.
Psychology.
Cross-sectional.
| To investigate whether coping and alexithymia should be given significant consideration in the conceptualization of patient’s adjustment to psoriasis, or whether the cognitive model (illness perception) of the condition held by patients is adequate on its own. | 225 patients from Dermatology Centre at Hope Hospital, Salford.
Gender: 52% M, 48% F.
Age: 18–75 years.
Mean age: 43 years.
| PASI
PLSI
PDI
PSWQ
HADS
IPQ
Alexithymia Scale
COPE | Cognitive psychological factors, mainly illness perception and to a lesser extent coping, appear to be more important for the patients’ quality of life and psychological well-being than clinical severity.
| The study emphasizes the importance of recognizing that the onset of a chronic condition brings with it a range of difficulties that may vary considerably in their nature and severity as perceived by the patient.
Importance of cognitive factors represents a move towards more multidisciplinary model of patient care.
|
|
| [41] | Richards et al., 2004.
United Kingdom.
Psychology.
Cross-sectional.
| To investigate the representation of psoriasis symptoms in psoriasis patients and their healthy partners, and to examine how their differences in beliefs about psoriasis may be associated with adaptive outcome in terms of anxiety, depression, and worry. | 58 patients with chronic plaque psoriasis and their partners, recruited either from specialty clinic, dermatology outpatient clinic or inpatient ward setting.
49% M, 51% F.
Mean age: 44 years; Mean duration of psoriasis: 18 years.
| SAPASI
IPQ-R
HADS
PSWQ | Patients with psoriasis had significantly higher levels of anxiety, depression and worry compared to their partners.
The study indicated that divergence in patients’ and partners’ beliefs about emotional impact of psoriasis and chronicity of timeline accounted for statistical variance in depression for partners. | The study offers an insight into the way in which divergence, in terms of the way psoriasis is perceived by patients and their partners, may have an impact on psychological and clinical outcome.
Moreover, the results illustrate the importance of concordance between the patients’ and partners’ models of psoriasis in relation to adjustment, and highlight the need to consider and collaborate with both patients and their partners in managing the challenging condition. |
|
| [42] | Jankowiak et al., 2004.
Poland.
Nursing.
Cross-sectional.
| To determine the need for health education among patients with psoriasis through the determination of gaps that most frequently occur in this kind of knowledge. | 149 patients.
Gender: 45% M, 55% F.
Age: 13–78 years; mean age 41 years. | Questionnaire based on the PDI. | The study illustrated, among other things:
(i) 54% reported stress as a cause while 43% were unable to report any factor causing the disease. | Patients with psoriasis need to expand their knowledge about the disease and self-care methods. The largest knowledge deficit observed were the factors causing the disease.
There is a need for individualized health education programmes. |
|
| [43] | O’Leary et al., 2004.
United Kingdom.
Psychology.
Cross-sectional.
| To assess causal beliefs in a psoriasis population and to examine the link between these attributions and mood, quality of life, and health status.
To measure perceived stress and examine the relationship between psychological well-being and psoriasis severity. | 40 patients from an outpatient skin clinic and 101 from the Psoriasis Association.
Gender: 58 M and 83 F.
Mean age: 45 years (females were significantly younger than males).
Mean duration of disease: 23 years. | PSS
PDI
SAPASI
IPQ-R
HADS | The most commonly endorsed causes were “stress/worry”. More than 60% of the sample scored above the scale midpoint for “stress/psychological” indicating a strong causal belief in this factor
Levels of perceived stress, whilst strongly associated with mood and quality of life, were not associated with psoriasis severity.
| A large proportion of people with psoriasis believe that stress is a causal factor in their illness. This belief was associated with poorer psychological well-being and the perception that psoriasis has a large emotional impact.
Patients with psoriasis may need cognitive-behavioural interventions, which would allow individuals to identify their beliefs about their psoriasis and their medication and the impact that these have on their subsequent well-being and behaviour. |
|
| [44] | Fortune et al., 2004a.
United Kingdom.
Psychology.
Prospective.
| To investigate whether, and to what extent, improvement in the clinical severity of psoriasis induced by photochemotheraphy with psoralen plus ultraviolet A translates into meaningful changes in beliefs about psoriasis, coping, stress or disability.
| 72 patients with psoriasis referred for PUVA treatment.
Gender: 45 M, 27 F.
Mean age: 42 years; duration of psoriasis: 2–50 years.
Response rate: 100. | PASI
PLSI
PDI
PSWQ
HADS
IPQ
COPE Scale
| The study reported that the medical management of psoriasis has demonstrable effects on disability and psoriasis-related stress experienced by the current sample of patients, but not on levels of distress, beliefs about psoriasis or on the coping strategies used by patients.
| The findings imply that clinical clearance of psoriasis is not sufficient to bring about changes in patients’ distress. Unlike disability, distress in patients with psoriasis is possibly linked to the cognitive aspects of a patients’ world view rather than to its more behavioural aspects.
To minimize psychological distress and physical severity of the disease, patients with psoriasis may need multidisciplinary treatment programmes to challenge and change unhelpful beliefs about the condition, to develop and foster more appropriate coping responses. |
|
| [45] | Evers et al., 2005.
The Netherlands.
Psychology.
Cross-sectional.
| To examine whether generic physical, psychological and social factors relevant to patients with chronic diseases contribute to psychological distress in adults with psoriasis and atopic dermatitis.
| 128 patients with psoriasis and 128 patients with atopic dermatitis (aged over 16 years) from a dermatology clinic at University Medical Center, St. Radbound.
Gender: 39% M, 61% F.
Mean age: 48 years; mean duration of disease: 18 years.
| Skin status assessed with a nine-item scale.
Itching: four-item scale and VAS.
Fatigue: VAS.
IRGL.
Disease Impact Scale.
Illness Cognition Questionnaire.
IRGL—Social Functioning Scale. | The study reported that higher levels of psychological distress were significantly related to physical symptoms of fatigue, a greater impact of disease on daily life, illness cognition of greater helplessness and less acceptance, less perceived support and a smaller social network.
| The study indicates that at least 30% of the patients suffer from a higher level of psychological distress.
Higher levels of fatigue, illness cognitions of greater helplessness and less perceived support significantly contribute to distress in these patients.
The study indicates that patients with psoriasis could possibly benefit from multidisciplinary treatment options that focus on fatigue reduction (focusing on sleep disturbance, rest-activity balance), changing patients’ pessimistic and helpless attitudes towards their disease by improving patients self-efficacy in coping with disease, and mobilizing social support from significant others. |
|
| [46] | Wahl et al., 2006.
Norway.
Nursing
Cross-sectional.
| To characterize how hospitalized patients coped with psoriasis and eczema during exacerbation of the disease in the period prior to admission to the dermatology ward, and to investigate the relationship between coping and quality of life. | 146 hospitalized patients with psoriasis
Gender: 69 M, 76 F.
Mean age: 49.5 years.
Mean duration of psoriasis: 19.1 years.
| JCS.
DLQI-N.
The Perception of Living with Disease.
| The results indicate that optimistic, belief-in-oneself and confrontational strategies are most frequently used among patients who are admitted to the dermatological ward for treatment. Use of confronting strategies is related to better quality of life.
Duration of illness is significantly related to supportive coping strategy and belief-in-oneself. The longer one had the disease, the more often one used the belief-in-oneself mode.
Women and younger people use emotional coping strategies more often than men and older people. | It appears that illness results in a generic form of coping that may require shaping to fit the individual demands of diseases like psoriasis, and that patients with psoriasis tend to use significantly less active coping strategies.
Furthermore it seems that patients who have lived and functioned longer with psoriasis may have acquired more individual knowledge concerning the illness, thereby making them less dependent on support from others to cope with problems related to the disease.
The findings highlight the complex features of the patients’ psychological experiences of psoriasis and underline the need for integrating psychological interventions into standard care protocols. |
|
| [47] | Unaeze et al., 2006.
USA.
Medicine.
Prospective.
| To examine changes in specific aspects in which psoriasis may impact individuals over time, and to determine sociodemographic and clinical characteristics associated with HRQOL at baseline 1993 and with change in HRQOL over time. | 867 patients completed questionnaire in 1993.
484 patients completed questionnaire in 2004
Gender: 62% M, 38% F.
Mean age: 53 years (2004).
| IPSO. | Responses to items assessing the impact of psoriasis on social aspects of HRQOL such as social activities, holiday or travel plans, and making new friends were generally stable.
Over a period of more than a decade, impairment owing to psoriasis-related physical appearance decreased significantly (e.g., embarrassment/shame, unattractiveness, feeling like an outcast, which is among the worst aspects of psoriasis for the majority of patients). | The overall psychosocial impact of psoriasis on patients HRQOL decrease over time.
The results suggest that chronic skin disease may become less burdensome compared to other health problems that increase with age. |
|
| [48] | Dubertret et al., 2006.
Europe.
Medicine.
Cross-sectional.
| To explore the patients’ perspective of psoriasis on their lifestyle and well-being and to gain insight into effectiveness and satisfaction with current available therapies for psoriasis.
| 18.386 patient association members in seven European countries (Belgium, the Czech republic, Finland, France, Germany, Italy, and the Netherlands).
Gender: 49% M, 51% F.
Mean age: 30 years; Mean duration of psoriasis: 23 years.
Response rate: 36.
| Self-administered questionnaire developed in collaboration with EUROPSO (European Federation of Psoriasis Patients Associations) and the NPF (National Psoriasis Foundation).
PDI. | (i) More than 70% reported psoriasis having an overall impact on their lives. The impact was greater with involvement of feet, armpits, genitals and hands.
(ii) 48% of reported disability was accounted for by problems related to activities of daily living, especially relating to washing and changing clothes, the need to bathe more frequently, sporting activities, and problems with sleep.
(iii) 50% report the fact that therapy is time-consuming as the most troublesome aspect of treatment, followed by ineffectiveness. | It is evident from this survey that patients with psoriasis suffer from significant impairment of their QoL.
The perceived severity of disease is associated to the involvement of body area. It seems that self-reported severity of disease is associated with the overall impact of disease.
The study enhances the understanding of complex interrelations between QoL impairment, psychological stress, disease severity assessment and patients’ educational needs regarding their disease. |
|
| [49] | Uttjek et al., 2007.
Sweden.
Medicine.
Qualitative.
| The main issue is to find out how psoriasis affects the individual’s everyday life, and if there is any variation between genders.
| 18 patients were selected from a population of a previous study with regard to gender, place of residence, and in relation to three district health care centres in Västerbotten.
Age: 37–74 year, mean 58 years
| Transcribed interviews.
| The following themes emerged:
(i) Marked by Visibility
(ii) Adjustment
(iii) Routinization
(iv) Quality of life
The most distinctive feature among both men and women, and with no variation between genders, was the feeling of being marked by the visibility of psoriasis in different social situations.
Coping strategies did not differ among gender. The participants lived their lives with psoriasis in acceptance and/or restrictions, turning it into a routine in everyday life, which influenced the quality of life.
Acceptance as well as routinization of the marking process developed with age, whereas concealing and avoiding were strategies used at all ages. | The worst situations occurred when patients were young and after onset of psoriasis, and included the visibility, the feeling of being marked, the struggle to conceal the disease and the fear of being rejected.
Being with family or friends or being of some use contributed to good quality of life.
The burden of being marked by the visibility was like an ever-present shadow for most of the patients and lead to restrictions in everyday life.
Adolescence was found to be a tough period with psoriasis.
As long as marking and discretion processes are going on in society, it is important to provide persons with psoriasis adequate help and support to not restrict their everyday life. |
|
| [50] | Eghlileb et al., 2007.
United Kingdom.
Medicine.
Qualitative.
| To identify the various ways in which the lives of relatives and partners of people with psoriasis are affected by the disease.
| 63 patients with psoriasis and their relatives or partners from a dermatology outpatients department of the University Hospital of Wales.
Gender: 40 F 23 M.
Age: 20–80 years.
Mean age: 51 years. | Transcribed interviews and an open-ended postal questionnaire.
| The impairment of relatives’ lives were assigned to six different domains:
(i) Treatment
(ii) Psychological impact
(iii) Social disruption
(iv) Sport and leisure limitations
(v) Daily activities
(vi) Personal relationships | Psoriasis not only interferes with the daily lives and social functioning of patients with psoriasis, but also has a major impact on QoL of their relatives and partners.
The study indicates the need to develop appropriate new care strategies for patients with psoriasis, also including their partners and families. |
|
| [51] |
Watson and de Bruin 2007.
South Africa.
Psychology.
Qualitative.
Disease-specific factors.
Self-experience burden.
Personal factors. | To describe the lived experiences of men and women with psoriasis and how their perceived experiences impact the various dimensions of their self-concept.
| 7 patients with psoriasis.
Gender: 3 M, 4 F.
Age: 29–65 years.
Illness duration: 11–60 years. | Patients’ detailed descriptions
of their perceptions and descriptions
of their intrapersonal and interpersonal self as a person living with psoriasis.
| The findings are synthesized in themes shared by all participants:
(i) Impact of psoriasis on self-concept evaluation.
(ii) Implications of treatment on the self-concept experience.
(iii) Coping methods to enhance the self-concept.
(iv) Meaning-making of the psoriasis self-concept experience.
Psoriasis is described as invasive, intrusive, violating and disgusting, and is defined as an assault on the physical self that was unsightly, painful, embarrassing and humiliating.
Psychological adapting to psoriasis was described as a journey of emotional and physical turmoil in the reconstructing of self. | Evident from the study is the tremendous power yielded by psoriasis in the arena of self-concept change. According to the participants, psoriasis is life changing radically, altering the self and the participants’ being in contact with the self and others.
Psoriasis knows no boundaries in its assault on the physical body. The experience of living with psoriasis leaves the patient feeling entrapped within an unfamiliar body
Being young and single with psoriasis is described as devastating.
|
|
| [52] |
Amatya and Nordlind 2008.
Sweden.
Medicine.
Qualitative.
| To assess patients’ perspective of pruritus in psoriasis vulgaris of plaque type.
| 20 patients selected from outpatient clinical records of the Department of Dermatology, Karolinska University Hospital.
Intensity of itch > 4 by VAS.
Gender: 7 M, 13 F.
Age: 30–55 years.
Mean disease duration: 17.7 years. | Transcribed interviews.
| Pruritus is a common phenomenon in patients with psoriasis.
Patients regard themselves as able to discriminate between pain and pruritus.
Itch rather felt like pins and needles, and is characterized as burning and irresistible.
Unbearable pruritus affects quality of life, that is, not taking part in general social activities and feelings of depression. | The study indicated that pruritus may be severe and affect quality of life in psoriasis patients.
|
|
| [53] | Magin et al., 2009.
Australia.
Medicine.
Qualitative.
| To investigate the psychological co-morbidities in psoriasis in patients from general (family) practice and specialist practices.
| 29 patients with various disease duration and disease severity.
Gender: 11 M, 18 F.
Age: 25–71 years.
| Transcribed interviews. | A schema of the interactions of psoriasis and psychological co- morbidities is developed with individual themes:
(i) Appearance and self-image, self-esteem and self-identity. Subjects often expressed a belief that they were defined by their skin and reported diminished self-esteem.
(ii) Behavioural consequences: Social interactions and lifestyle were circumscribed by avoiding activities leading to embarrassment and shame, caused by a sense that others were scrutinizing and judging character or intrinsic world.
| Psychological sequelae are complex and encompass a range of psychological morbidities. Symptoms of anxiety and depression were often causally linked by respondents to experiences of embarrassment or shame or to the socially limiting effects of behavioural avoidance. This was overt in cases where children with psoriasis were teased or taunted.
The study indicates that psychological sequelae are more common in females, but males are also markedly affected including concerns regarding appearance and social and sexual attractiveness.
Patients with psoriasis need social support and a patient-centered approach to management, emphasizing coping strategies, patient education and subsequent involvement in management decisions might reduce psychological co-morbidity. |
|
| [54] | Globe et al., 2009.
USA.
Medicine.
Qualitative.
| To explore psoriasis patients’ perception of the impact of psoriasis. | 39 patients identified by general practitioners participated in 5 separate concept elicitation focus groups.
4 groups included 31 patients with severe psoriasis, and 1 group included 8 patients with mild psoriasis.
Gender: 17 M, 22 F.
| Transcribed interviews. | All participants reported itch as an important impact on everyday life.
The affective dimensions of itch were described as unbearable, worrisome, bothersome and annoying.
The sensory dimension of itch was described as burning, stinging, and crawling like ants.
Itch symptoms affected sleep quality, concentration and regular physical activity. Some patients reported missing work or school because of itch symptoms. | From the patients’ perspective, itch is one of the most important symptoms of psoriasis contributing to diminished health-related quality of life in patients with both mild and severe disease.
The sensory dimension of itch is a significant predictor of depression, distress and sleep impairment.
There is a need for assessment of itch in clinical practice to help patients with this troublesome symptom.
|
|
| [55] | Ljosaa et al., 2010.
Norway.
Nursing.
Cross-sectional.
| To investigate
(i) prevalence and characteristics of psoriasis-related skin pain and discomfort,
(ii) evaluate differences in demographic/clinical characteristics among patients with or without skin symptoms, and
(iii) to explore symptoms characteristics. | 139 patients recruited prior to a consultation at the inpatient and outpatient dermatology units at a university hospital in Oslo.
Gender: 44% M, 56% F.
Mean age: 51 years. | Co-morbidity (SCQ-18).
Prevalence of skin pain and skin discomfort.
BPI.
PQAS.
PASI. | The study showed that
(i) 41.7% of patients reported skin pain.
(ii) 36.7% of patients reported skin discomfort.
Significantly higher percentages of patients with pain (88–94%) reported that their symptoms interfered with mood, work, sleep, and relations with other people compared to patients with discomfort.
Patients with pain reported significantly higher severity on items like enjoyment of life and daily activities. | Findings from this study suggest that psoriasis-related skin pain and skin discomfort may be a larger problem than previously estimated. |
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