Patient-reported outcome measures in nonmelanoma skin cancer of the face: a systematic review

Abstract

SummaryNonmelanoma skin cancer (NMSC) is the most common malignancy in the western world, with an incidence of 98 000 in the U.K. Since 2009 the Department of Health (DoH) has collected patient-reported outcome measure (PROM) data following four common surgical procedures. However, a DoH PROM for NMSC does not exist. A systematic review of questionnaires published on patient concerns due to NMSC of the face was conducted. Keywords relevant to PROMs, NMSC and the facial region were comprehensively searched in medical databases. Inclusion criteria stipulated that questionnaires from relevant papers recruited patients with NMSC for both the item formulation and subsequent validation. Questionnaires were then discussed by a multispecialty skin cancer research team. Initially 2548 papers were found; after exclusion criteria were applied, 73 articles were retrieved. Four patient questionnaires for NMSC featured adequate development and validation according to the inclusion criteria. The Facial Skin Cancer Index (FSCI) was the only PROM specific to facial NMSC. Additional questionnaires identified included the Skin Cancer Quality of Life Impact Tool, Skindex, and Dermatology Life Quality Index. There is a scarcity of data relating to NMSC PROMs and appearance concerns. Only one questionnaire -the FSCI -was specific to patients with facial NMSC. We recommend nationally standardized data collection from patients with NMSC in order to create an evidence-based validated PROM for patients with facial skin cancer.

Patient experiences and outcomes following facial skin cancer surgery: A qualitative study

“…4,12 Although the rate of traditional adverse events (e.g. infection) are low in dermatologic surgery, when patients were asked to comment on problems and complications, a broader range of concerns were elicited.…”

A Spanish version of the skin cancer index: a questionnaire for measuring quality of life in patients with cervicofacial nonmelanoma skin cancer

“…The impact of NMSC on patients’ quality of life is one of its most important aspects and, at the same time, the least understood, due to the limitations of the study tools available. Neither the generic patient‐reported outcome measures (PROMs) used in previous research [UK Sickness Impact Profile (UKSIP), Short Form (36) Health Survey (SF‐36), Functional Assessment of Cancer Therapy‐General (FACT‐G), Ways of Coping Inventory – Cancer Version (WOC‐CA)] nor the dermatological [Dermatological Life Quality Index (DLQI), Skindex‐29, Skindex‐16 and Skindex‐17] are valid instruments, and disease‐specific questionnaires are needed …”

“…Neither the generic patient-reported outcome measures (PROMs) used in previous research [UK Sickness Impact Profile (UKSIP), 10 Short Form (36) Health Survey (SF-36), Functional Assessment of Cancer Therapy-General (FACT-G), 6,[11][12][13] Ways of Coping Inventory -Cancer Version (WOC-CA) 14 ] nor the dermatological [Dermatological Life Quality Index (DLQI), 10,[15][16][17][18]19 Skindex-16 [20][21][22] and Skindex-17 23 ] are valid instruments, and disease-specific questionnaires are needed. 24,25 In 2005, Rhee et al created the first specific instrument for assessing quality of life in patients with cervicofacial NMSC (CFNMSC), which they termed the Skin Cancer Index (SCI). 26 The original scale consisted of 36 items relating to six dimensions (emotional, social/family, economic/occupational, appearance, lifestyle, symptoms/functional activity).…”

Validation and comparison of quality-of-life measures for topical 5-fluorouracil treatment: results from a randomized controlled trial

“…Our results suggest that Skindex was a better reflection than SCI of the changes from topical 5‐FU, because more Skindex subscales were responsive to 5‐FU compared with SCI subscales, the changes in Skindex subscales were associated with the number of AK (which can be a proxy for actinic damage, whose severity is related to exuberant reaction to 5‐FU), and the Skindex subscales correlated better with the other measures of 5‐FU AEs. KC‐specific QoL instruments are anecdotally considered to capture KC‐related outcomes better than nonspecific dermatology ones . However, our study indicates that the nonspecific dermatology QoL instrument (Skindex) performed better than the KC‐specific QoL instrument (SCI) in detecting QoL changes associated with topical treatment.…”