The needs and experiences of people with a diagnosis of skin cancer.

Abstract

Background Skin cancer is the most common type of cancer in humans 1, the incidence of which is increasing in the UK and across the world 2,3,4,5,6,7,8 There are two main types of skin cancer: melanoma and non-melanoma skin cancer (NMSC). NMSC make up around 97% of skin cancers which are either basal cell carcinomas (BCCs), or squamous cell carcinomas (SCCs) together with some rarer types. Although melanoma is less common it is responsible for 1800 deaths per year in the UK which is 75% of skin cancer deaths 9. Skin cancers affect people from all communities and age groups, predominantly in the over 50 age range, although it has been shown that the incidence of BCC is increasing in the young 8. Incidence of melanoma is much lower compared to NMSC, but is rising in light skinned populations worldwide 10, 11. Globally, an estimated 2-3 million new cases of NMSC are recorded each year and the WHO estimates 132,000 new cases of cutaneous melanoma per year internationally 12 Treatment options for NMSC have been reviewed elsewhere 13, 14.If adequately treated BCC have an excellent prognosis. If left untreated, or if inadequately treated, the BCC can cause extensive local tissue destruction, particularly on the face. Death from BCC is extremely rare, but may occur in neglected cases and/or those with major underlying immunosuppression. Treatment for SCCs is aimed at complete removal of the primary tumour and any metastases. Tumour location, size, depth, histological differentiation, host immunosuppression, previous treatment and type of treatment are all factors that can affect the metastatic potential. Melanoma has a greater potential for metastasis, and malignant melanoma is a far more dangerous cancer than BCC or SCC. Surgery is the treatment of choice and it is essential that this is done with wide local excision of the tumour with excision margins based on tumour depth. Patients with a diagnosis of skin cancer are likely to be faced with a number of challenges. These include the psychological distress associated with a cancer diagnosis, treatment (which may be disfiguring and painful) and ongoing surveillance; information, support and decision-making needs and the requirement to cope and adjust to the impact of morbidity and possible future treatments over time, all of which can impact on their quality of life. NHS professionals caring for these patients need to be well informed about their psychosocial concerns in order to design services appropriately and to provide patients with information that they can easily understand. The majority of care for these patients is provided by nurses in the form of specialist skin cancer nurses as well as nurses providing care in dermatology out-patient clinics and GP surgeries. Despite this increase in number of people being diagnoses in skin cancer each year the needs and experiences of people with skin cancer has received little or no attention. Rationale for doing this review. There is no qualitative systematic review that looks at the needs and experiences of skin cancer patients. Objectives The aim is to conduct a systematic review looking at the needs and experiences of people with a diagnosis of skin cancer. Criteria for considering studies for this review For studies to be included in the systematic review they must meet all the inclusion criteria. Types of studies Any qualitative studies (including ethnographies, phenomenologies, and grounded theory studies) that meet the inclusion criteria will be considered. In the absence of qualitative studies then expert opinion describing patient experiences will be considered. Types of participants This review will consider studies of people with skin cancer (non-melanoma skin cancer and melanoma skin cancer). Phenomena of Interest The phenomena of interest are the needs and experiences of people with skin cancer. Outcome of interest Outcomes of interest include peoples experience of having a skin cancer at any point of the cancer journey and afterwards. Search strategy for identification of studies The search will seek to find both published and unpublished studies. The following databases will be searched: MEDLINE EMBASE CINAHL Web of Science ASSIA PSYCHINFO BNI For details of the MEDLINE search strategy used, please see I. Searching other resources The search for unpublished studies will use the following sources: Dissertation Abstracts International ASLIB Mednar In addition we will check references from published studies. Language No language restrictions were imposed and translations were obtained where necessary. Methods of review Assessment of methodological quality Methodological quality of studies and papers will be assessed by two people independently (JB, FB-H) using the Joanna Briggs Institute-Qualitative Assessment and Review Instrument (JBI-QARI) checklist based on the work of the Joanna Briggs Institute. (Appendix II) Data Extraction Data will be extracted by two people (AK, JB) from included studies using the JBI-QARI data extraction tool based on the work of the JBI. (Appendix III) The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives. Data synthesis Where possible data will be synthesised using the Qualitative Assessment and Review Instrument. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings (Level 1 findings) rates according to their quality, and categorising these findings on the basis of similarity in meaning (Level 2 findings). These categories are then subjected to a meta-aggregation in order to produce a single comprehensive set of aggregated findings (Level 3findings) that can be used as a basis for evidence-based practice. Where the synthesis is not appropriate or possible, the findings will be summarised narratively, listing significant factors or themes. Conflict of interest: None