MaterialsThis study is based on a questionnaire survey of patients diagnosed with melanoma during the period from 1st January 2015 to 1st January 2017 at San Raffaele Hospital. The questionnaire survey is titled Melanoma - Improving the Patient Experience. Three paper-based questionnaires were submitted to patients affected by melanoma and treated at San Raffaele Hospital during the two-year period, to their caregivers, and to their healthcare providers. The questionnaires explored patients accounts of technical and interpersonal aspects of the various stages of melanoma care.
Data on general demographic information of the participants, basic knowledge regarding melanoma, specific questions related to the patient's illness, questions regarding additional informational needs, screening behaviours and evaluation of the support provided by the healthcare personnel were obtained from the questionnaire.
Research Goals and Objectives
Patients with melanoma have diverse needs which are, partly, associated with the illness and partly to the care process (Chiesi, Bonacchi, Primi, & Miccinesi, 2017). According to Osse, Vernooij-Dassen, de Vree, Schade, and Grol (2000), the presence of unmet need relates to need to receive support with a demand perceived by an individual suffering from melanoma as not sufficiently addressed by the care system. Consequently, it is seen as a patients request to the healthcare staff involved in melanoma patients care and the institution in general for the address of the unmet need.
Studies have also reported that the support received from healthcare and social services by melanoma patients is inappropriate and patients have often complained of unmet needs following treatment (Sanson-Fisher et al., 2000; Thorsen et al., 2011). Because of this, the primary goal of the current study was to analyse patient-perceived unmet needs during the time of diagnosis and treatment of melanoma as well as to identify areas of excellence in melanoma patient care worth preserving in a tertiary referral hospital. Additionally, the study is aimed at establishing a more patient centred plan of care by proposing an action plan that will maximize the quality of care and improve overall patient satisfaction for patients being treated at San Raffaele Hospital.
Methods and Procedures
Methods
A paper-based questionnaire, consisting of 30 question in Italian, was developed to gather data on patients technical and interpersonal aspects of melanoma care. Administration of the questionnaire to the participants was conducted during the patient's follow-up care at San Raffaele hospital in Milan, Italy.
Research design
The current research study is a cross-sectional survey in melanoma patients treated at San Raffaele Hospital during the period from 1st January 2015 to 1st January 2017. The cross-sectional research design is the most appropriate for this study because it helps to collect data that cannot be directly observed but can be self-reported, such as feelings and opinions. Cross-sectional data is collected via questionnaires or interviews and used to make inferences about a population of interest at one point in time (Lavrakas, 2008). In this study, a questionnaire was used to collect data on various variables of research interest.
Patient Selection
The target population in this study included melanoma patients with stage I-III melanoma. The following criteria for the inclusion and exclusion of patients were used in the study: the patient must have been diagnosed with the condition at least 6 months and not exceeding five years, should not have had any other type of cancer, should have had more than 3 months post-treatment, should volunteer to enroll in the study and be willing to complete the research instruments. Additionally, Melanoma patients between the ages of ages 1 to 75 only were recruited for the survey. After that, the participants were grouped according to their age groups as follows: <18 18, 29 30, 44 45, 59 60, and 74 >75.
The participants were recruited using non-probability sampling technique. Specifically, purposive sampling was employed in picking the sample. In this sampling approach, a group of individuals with specific characteristics or set of experience are enrolled in a study (Moule & Goodman, 2009). For the purposive of this research, only patients diagnosed with melanoma were needed to address the goals and objectives of the study. In total, 60 adult patients were recruited using purposive sampling. This sample size was based on the number needed to evaluate the relationship between the predictor and the outcome variables for at least one unmet need. The study went through universitys ethics committee approval and the San Raffaele Hospital. Patients who met the eligibility criteria were approached in the hospital after permission had been sought form the hospitals administration and relevant departments. Patients who agreed to undertake the study were required to sign a consent form, complete the research instrument, and return them via mail or during their next appointment. To improve participants response rates, a reminder letter was sent to non-respondents after 2 weeks.
Research Instruments
The research instrument that was used in this study is called Melanoma - Improving the Patient Experience which consists of different sections meant to gather various data from the clients. The first part of the questionnaire collects demographic information from the participants. This section is comprised of six questions and addresses questions regarding the participants name, gender, age, the highest level of education the participant has completed, and his or her employment status. The second part, which is made of five questions, addresses participants basic knowledge of melanoma. Specifically, it tests the participants understanding of his or her stage of melanoma, knowledge of diagnosis and prognosis of the disease when the patient was first diagnosed, whether the participant was provided with educational tools to help him or her to have a better understanding of diagnosis and the treatment options of the disease. The third part asks specific questions related to the patient's illness, such as patients level of involvement in the treatment, patients feeling when asking the medical team/physician questions regarding his or her diagnosis or treatment, availability of the medical team the postoperative and follow-up period, and patients frequency of inspection of the skin for possible skin cancer or for suspicious lesions. The fourth part of the questionnaire asks questions pertaining to additional informational needs, screening behaviour and also evaluates the support provided by the healthcare personnel.
The questionnaires were administered by mail or via telephone. The reliability of the instrument was tested through test-retest reliability in SPSS version 20. It was found to have an excellent reliability of 0.8. On the other hand, the validity of the instrument was ensured through the use of content experts who reviewed and assessed item quality to make sure that the items included in the final questionnaire covered the domains needed to address the goals and objectives of the study.
References
Chiesi, F., Bonacchi, A., Primi, C., & Miccinesi, G. (2017). Assessing unmet needs in patients with cancer: an investigation of differential item functioning of the needs evaluation questionnaire across gender, age and phase of the disease. PLOS ONE, 12(7), e0179765.
Lavrakas, P. J. (2008). Encyclopedia of survey research methods. SAGE Publications.
Moule, P., & Goodman, M. (2009). Nursing research: an introduction. SAGE Publications.
Osse, B. H., Vernooij-Dassen, M. J., de Vree, B. P., Schade, E., & Grol, R. P. (2000). Assessment of the need for palliative care as perceived by individual cancer patients and their families. Cancer, 88(4), 900911.
SansonFisher, R., Girgis, A., Boyes, A., Bonevski, B., Burton, L., & Cook, P. (2000). The unmet supportive care needs of patients with cancer. Cancer, 88(1), 226-237.
Thorsen, L., Gjerset, G. M., Loge, J. H., Kiserud, C. E., Skovlund, E., Flotten, T., & Fossa, S. D. (2011). Cancer patients needs for rehabilitation services. Acta Oncologica, 50(2), 212- 222.
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