What are the ‘needs’ of cancer patients and their main carers?

Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer

“…Domains and items from existing measures were considered for relevance to the target population. Relevant unmet need scales identified in the literature search included the Supportive Care Needs Survey [32], Cancer Survivors' Unmet Needs measure [33], CaSPUN [30], the Cancer Patient Need Questionnaire [34,35], Cancer Patient Need Survey [36,37], Needs Evaluation Questionnaire [38], Patient Needs Assessment Tool [39] and Psychosocial Needs Inventory [40]. The measures were examined for items and domains considered relevant to the parents and/or carers of AYA cancer survivors.…”

“…Return of the measure was taken as informed consent for their data to be included in the study. Twenty-seven [32,[38][39][40] Education and work a Educational or vocational needs such as being able to catch up on study, being able to continue studying or having the option to work part-time [36,37] Relationships Social needs related to help coping with changes in relationships with friends/family members and asking for support [33-35, 38, 40] Feelings Emotions (e.g. loneliness, anxiety and frustration), coping mechanisms (e.g.…”

“…loneliness, anxiety and frustration), coping mechanisms (e.g. help finding my inner strength) and self-esteem [32, 34-37, 39, 40] Cancer treatment centre Location and environment of the hospital or clinic, such as having privacy, and nearby accommodation [34,35,38] Cancer treatment staff Staff-carer interactions and processes of care delivery, including the communication skills of staff, involvement in decision-making about treatment and continuity of care [32,33,[38][39][40] Information Content of the information (e.g. effects of treatment on fertility) and delivery of the information (e.g.…”

“…effects of treatment on fertility) and delivery of the information (e.g. having information presented in different ways) [32,[34][35][36][37][38]40] a Education and work were later split into two separate domains parents and carers completed the unmet needs measure (response rate 54%). The resulting sample consisted of 78% females with a mean age of 51 years.…”

What are the unmet supportive care needs of people with cancer? A systematic review

“…Similarly, the Cancer Rehabilitation Evaluation System (CARES) [57,58] measures need items from six domains, first on a five-point scale to indicate whether the need applies and then whether additional help is required. The Problems and Needs in Palliative Care [54], Needs Evaluation Questionnaire [68] and Psychosocial Needs Inventory [72] are other examples of instruments that ascertain unmet need. Alternate instruments enable a score to be calculated to highlight how well each need item has been met (Cancer Patient Needs Survey [23]).…”