Patient Experience and Knowledge of Non-Melanoma Skin Cancer
Patient Experience and Knowledge of Non-Melanoma Skin Cancer
A mixed method study, using postal questionnaires and semi structured interviews. Our objective was to understand the needs, experiences and knowledge of individuals with Non Melanoma Skin Cancer (NMSC) from diagnosis up until one year.
Consecutive patients, referred from primary care, attending a skin cancer clinic in a large teaching hospital in the East Midlands over an 8 month period in 2008/9 with a new clinical diagnosis of NMSC, were invited to take part in the study. No recurrent cases were included however patients with previous skin cancer were not excluded. Ethical approval was obtained from the Nottingham Research Ethics Committee 1 (08/H0403/83) and signed consent was obtained from all participants.
Questionnaires (Additional files 1 and 2) were sent to patients at four time points: baseline (just after diagnosis, usually the next day), treatment (same day or next day), 8 weeks post-treatment and 12 months from baseline. Body image and psychological morbidity were assessed at each time point using the Derriford Appearance Scale 24 (DAS24) and the Hospital Anxiety and Depression Scale (HADS). Knowledge of NMSC was assessed at baseline and 8 weeks post-treatment. This instrument was adapted from the melanoma knowledge questionnaire in consultation with dermatologists and piloted prior to use. Demographics and sun exposure data were collected at baseline and participants' concerns about how NMSC affected their quality of life were assessed after treatment, 8 weeks post-treatment and at 12 months from baseline using the Skin Cancer Index (SCI). See study flow chart, Figure 1. SCI was not assessed at baseline as the questions were deemed inappropriate for patients who had just received a diagnosis of NMSC.
We invited all participants to take part in an interview. Purposive sampling ensured we captured a proportion of younger people (< 60 yrs). Interviews were designed to elicit in-depth views, perceptions and descriptions of the experience of being treated for NMSC, recovery from treatment and feelings 12 months after diagnosis. A flexible interview guide (Additional file 3) was used to ensure consistency across the interviews while allowing interviewees to express their ideas, understanding and concerns freely.
Anxiety and Depression were measured using the Hospital Anxiety and Depression Scale (HADS), a 14-item self-rating scale, with questions pertaining to the past week, in medical outpatients, primary care and community settings, which have been validated for cancer patients. The HADS was answered by the participant on a four-point (0–3) response category with a possible score of 0 to 21 for anxiety (7 items) and for depression (7 items). For each construct, a score below 8 was classified as 'normal', 8–10 as 'borderline' and above 10 as 'caseness' (probable presence of disorder).
The Derriford Appearance Scale (DAS24) is a 24-item scale designed to measure distress and dysfunction in relation to problems of appearance. Some of the items request a response about the intensity of emotional response, using response categories of 'extremely' to 'not at all' (e.g. 'How distressed do you get when you see yourself in the mirror/window?'). Other items ask about the frequency of particular behaviours indicative of a self-conscious response (e.g. 'I avoid going out of the house'), using an 'almost always' to 'never/almost never' set of response categories. Where appropriate, a response of 'not applicable' is allowed. There is no threshold score or cut-off point to indicate 'caseness'. The minimum score is 11 and the maximum is 96 (highest distress/dysfunction).
Knowledge of NMSC was ascertained using three free-response questions to assess knowledge about how to reduce risk from NMSC (one mark for each of avoiding sunburn, not using sun beds, checking skin frequently), what type of people are at risk of NMSC (one mark for each of fair skin, sunbather, work outdoors, use of sun beds, previous skin cancer/family history of skin cancer, older age), and early skin signs of NMSC (one mark for stating any of the following: lump/pearly lump/change in lump/sore/unusual area/new area/recently grown plus one mark for mentioning a surface change that is non-healing :crusting, scabbing, bleeding plus half a mark for using the word raised). The maximum possible score is 11.5.
The Skin Cancer Index (SCI) is a 15 item, validated, disease-specific QOL instrument with 3 distinct subscales, Emotion, Social, and Appearance. Higher scores reflect better quality of life. Summary statistics were computed for each SCI question, the three SCI subscale totals, and the overall SCI total. The subscales were transformed so that each subscale, and the total, was between 0 and 100.
All quantitative analyses was performed using SPSS version 16.0. Summary statistics were computed for the HADS anxiety and depression, DAS24, Knowledge of NMSC, and total SCI. 95% confidence intervals for the means of each outcome were calculated at various time points and for the change over time windows. We used paired t test for examining the HADS, DAS24 and also the SCI index. We calculated the mean change in HADS anxiety and depression and DAS24 across three different time windows: baseline – 12 months post baseline, treatment – eight weeks post treatment, and treatment – 12 months post baseline. We also calculated the mean change in SCI across 2 different time windows: treatment - 8 weeks post treatment and treatment - 12 months post baseline.
Interviews were transcribed and analysed using thematic content analysis. The qualitative data analysis package NVivo8 was used to deductively and inductively derive codes and check that these harmonized with the context of the interview statement. Codes were grouped into clusters and categorised into major themes. Members of the team collectively analysed and discussed the emerging themes.
Methods
A mixed method study, using postal questionnaires and semi structured interviews. Our objective was to understand the needs, experiences and knowledge of individuals with Non Melanoma Skin Cancer (NMSC) from diagnosis up until one year.
Consecutive patients, referred from primary care, attending a skin cancer clinic in a large teaching hospital in the East Midlands over an 8 month period in 2008/9 with a new clinical diagnosis of NMSC, were invited to take part in the study. No recurrent cases were included however patients with previous skin cancer were not excluded. Ethical approval was obtained from the Nottingham Research Ethics Committee 1 (08/H0403/83) and signed consent was obtained from all participants.
Questionnaires (Additional files 1 and 2) were sent to patients at four time points: baseline (just after diagnosis, usually the next day), treatment (same day or next day), 8 weeks post-treatment and 12 months from baseline. Body image and psychological morbidity were assessed at each time point using the Derriford Appearance Scale 24 (DAS24) and the Hospital Anxiety and Depression Scale (HADS). Knowledge of NMSC was assessed at baseline and 8 weeks post-treatment. This instrument was adapted from the melanoma knowledge questionnaire in consultation with dermatologists and piloted prior to use. Demographics and sun exposure data were collected at baseline and participants' concerns about how NMSC affected their quality of life were assessed after treatment, 8 weeks post-treatment and at 12 months from baseline using the Skin Cancer Index (SCI). See study flow chart, Figure 1. SCI was not assessed at baseline as the questions were deemed inappropriate for patients who had just received a diagnosis of NMSC.
We invited all participants to take part in an interview. Purposive sampling ensured we captured a proportion of younger people (< 60 yrs). Interviews were designed to elicit in-depth views, perceptions and descriptions of the experience of being treated for NMSC, recovery from treatment and feelings 12 months after diagnosis. A flexible interview guide (Additional file 3) was used to ensure consistency across the interviews while allowing interviewees to express their ideas, understanding and concerns freely.
Anxiety and Depression were measured using the Hospital Anxiety and Depression Scale (HADS), a 14-item self-rating scale, with questions pertaining to the past week, in medical outpatients, primary care and community settings, which have been validated for cancer patients. The HADS was answered by the participant on a four-point (0–3) response category with a possible score of 0 to 21 for anxiety (7 items) and for depression (7 items). For each construct, a score below 8 was classified as 'normal', 8–10 as 'borderline' and above 10 as 'caseness' (probable presence of disorder).
The Derriford Appearance Scale (DAS24) is a 24-item scale designed to measure distress and dysfunction in relation to problems of appearance. Some of the items request a response about the intensity of emotional response, using response categories of 'extremely' to 'not at all' (e.g. 'How distressed do you get when you see yourself in the mirror/window?'). Other items ask about the frequency of particular behaviours indicative of a self-conscious response (e.g. 'I avoid going out of the house'), using an 'almost always' to 'never/almost never' set of response categories. Where appropriate, a response of 'not applicable' is allowed. There is no threshold score or cut-off point to indicate 'caseness'. The minimum score is 11 and the maximum is 96 (highest distress/dysfunction).
Knowledge of NMSC was ascertained using three free-response questions to assess knowledge about how to reduce risk from NMSC (one mark for each of avoiding sunburn, not using sun beds, checking skin frequently), what type of people are at risk of NMSC (one mark for each of fair skin, sunbather, work outdoors, use of sun beds, previous skin cancer/family history of skin cancer, older age), and early skin signs of NMSC (one mark for stating any of the following: lump/pearly lump/change in lump/sore/unusual area/new area/recently grown plus one mark for mentioning a surface change that is non-healing :crusting, scabbing, bleeding plus half a mark for using the word raised). The maximum possible score is 11.5.
The Skin Cancer Index (SCI) is a 15 item, validated, disease-specific QOL instrument with 3 distinct subscales, Emotion, Social, and Appearance. Higher scores reflect better quality of life. Summary statistics were computed for each SCI question, the three SCI subscale totals, and the overall SCI total. The subscales were transformed so that each subscale, and the total, was between 0 and 100.
All quantitative analyses was performed using SPSS version 16.0. Summary statistics were computed for the HADS anxiety and depression, DAS24, Knowledge of NMSC, and total SCI. 95% confidence intervals for the means of each outcome were calculated at various time points and for the change over time windows. We used paired t test for examining the HADS, DAS24 and also the SCI index. We calculated the mean change in HADS anxiety and depression and DAS24 across three different time windows: baseline – 12 months post baseline, treatment – eight weeks post treatment, and treatment – 12 months post baseline. We also calculated the mean change in SCI across 2 different time windows: treatment - 8 weeks post treatment and treatment - 12 months post baseline.
Interviews were transcribed and analysed using thematic content analysis. The qualitative data analysis package NVivo8 was used to deductively and inductively derive codes and check that these harmonized with the context of the interview statement. Codes were grouped into clusters and categorised into major themes. Members of the team collectively analysed and discussed the emerging themes.