Naseem Ghazali

Fear of recurrence among head and neck cancer survivors: longitudinal trends

Fear of recurrence (FoR) following head and neck cancer (HNC) treatment is a major patient concern but is infrequently discussed in outpatient settings and may cause significant detrimental effect on patient psychological well‐being.

Patient-reported outcomes in breast oncology: a review of validated outcome instruments.

AIMS AND BACKGROUNDnPatient-reported outcomes (PROs) include areas of health-related quality of life but also broader concepts such as patient satisfaction with care. The aim of this review is to give an account of all instruments with potential use in patients with a history of treatment for breast cancer (including surgery, chemotherapy and/or radiotherapy) with evidence of validation in the breast cancer population.nnnMETHODSnAll instruments included in this review were identified as PRO measures measuring breast-related quality of life and/or satisfaction that had undergone development and validation with breast oncology patients. We specifically looked for PRO measures examining patient satisfaction and/or quality of life after breast cancer treatment. Following an evaluation of 323 papers, we identified 15 instruments that were able to satisfy our inclusion criteria.nnnRESULTSnThese instruments are the EORTC QOL-C30 and QLQ-BR23 (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Breast Cancer Module), the FACT-B (Functional Assessment of Cancer Therapy-Breast Cancer), the SLDS-BC (Satisfaction with Life Domains Scale for Breast Cancer), the BIBCQ (Body Image after Breast Cancer Questionnaire), the HIBS (Hopwood Body Image Scale), the PBIS (Polivy Body Image Scale), the MBROS (Michigan Breast Reconstruction Outcomes Study) Satisfaction and Body Image Questionnaires, the BREAST-Q, the BCTOS (Breast Cancer Treatment Outcome Scale), the BCQ, the FACT-ES (Functional Assessment of Cancer Therapy-Endocrine System), the MAS (Mastectomy Attitude Scale), and the Breast Cancer Prevention Trial Symptom Checklist (BCPT).nnnCONCLUSIONSnSuggestions for future directions include (1) to use and utilize validated instruments tailored to clinical practice; (2) to develop a comprehensive measurement of surgical outcome requiring the combination of objective and subjective measures; (3) to aim for a compromise between these two competing considerations in the form of a scale incorporating both generalizability in cancer-related QOL and specificity in breast cancer issues.

Treatment referral before and after the introduction of the Liverpool Patients Concerns Inventory (PCI) into routine head and neck oncology outpatient clinics

PurposeHolistic needs assessment is a key recommendation in improving supportive and palliative care in adults with cancer. The Patients Concerns Inventory (PCI) is a holistic needs assessment tool designed for head and neck cancer survivors in outpatient setting. Routine screening of potential unmet needs in a clinic may result in increased onward referrals, thus placing a burden on existing healthcare services. The aim of this study was to compare the referral trends following consultation in the time periods before and after introduction of PCI in an oncology outpatient clinic.MethodA cross-sectional cohort of disease-free survivors of oral/oropharyngeal cancers of a single consultant was prospectively exposed to PCI from July 2007 to April 2009. The PCI is a self-completed questionnaire consisting of 55 items of patient needs/concern and a list of multidisciplinary professionals, whom patients may wish to talk to or be referred to. Retrospective analysis of referral patterns from clinic letters in two periods in the pre-PCI and post-PCI exposure was performed. Prospective analysis of consultations was performed to determine the outcome of PCI-highlighted items.ResultsThere was no change in the prevalence of onward referral with the introduction of PCI, i.e. 21 referrals per 100 patients seen in outpatients. However, the proportion of referrals to oral rehabilitation and psychological support increased. Referrals to certain services, e.g. speech and language and dentistry, remained consistently in demand. Many PCI-highlighted needs were dealt in a clinic with by the consultant and/or other professionals during a multidisciplinary consultation.ConclusionsRoutine use of PCI promotes target efficiency by directing and apportioning appropriate services to meet the needs for supportive care of head and neck cancer survivors.

Enhanced patient reported outcome measurement suitable for head and neck cancer follow-up clinics

BackgroundThe ‘Worse-Stable-Better’ (W-S-B) question was introduced to capture patient-perceived change in University of Washington Quality of Life (UW-QOL) domains.Methods202 head and neck cancer patients in remission prospectively completed UW-QOL and Patients Concerns Inventory (PCI). For each UW-QOL domain, patients indicated whether over the last month things had worsened (W), remained stable (S) or were better (B).Results202 patients at 448 attendances selected 1752 PCI items they wanted to discuss in consultation, and 58% (1024/1752) of these were not covered by the UW-QOL. UW-QOL algorithms highlighted another 440 significant problems that the patient did not want to discuss (i.e. the corresponding items on the PCI were not selected).After making allowance for UW-QOL algorithms to identify significant problems and PCI selection of corresponding issues for discussion there remained clear residual and notable variation in W-S-B responses, in particular to identify patients with significant problems that were getting worse, and patients without significant problems that wanted to discuss issues that were getting worse. Changes in mean UW-QOL scores were notably lower for those getting worse on the W-S-B question, typically by 10 or more units a magnitude that suggests clinically important changes in score.ConclusionsThe W-S-B question adds little questionnaire burden and could help to better identify patients who might benefit from intervention. The results of this study suggest that the UW-QOL with the W-S-B modification should be used together with the PCI to allow optimal identification of issues for patient-clinician discussion during routine outpatient clinics.

Genomic determinants of normal tissue toxicity after radiotherapy for head and neck malignancy: A systematic review

Interindividual variations in radiotoxicity responses exist despite uniform treatment protocols. It is speculated that normal genetic variants, particularly single nucleotide polymorphisms (SNPs) may influence normal head and neck (HN) tissue radiotoxicity. This first-ever systematic review was undertaken to evaluate the association of SNPs with normal HN tissues radiotoxicity. Multiple databases (1950-February 2012) were reviewed using a combination of related keywords and MeSH terms. All published HN radiotoxicity studies with sufficient relevant data for extraction were included. The outcomes evaluated were acute and late radiotoxicity endpoints. Methodological quality assessment based on the STrengthening the REporting of Genetic Association (STREGA) statement was performed. Seven articles from 692 articles searched fulfilled the eligibility criteria. Recruited sample sizes were small (range, 32-140). There were 5/7 case-control studies. All studies used multimodality treatment with heterogeneous radiation parameters. Candidate gene approach was used in all studies. Fourteen SNPs from 9 genes were evaluated from the following pathways: DNA damage response, radiation fibrogenesis and oxidative/xenobiotic metabolism. Acute radiotoxicity events were associated with SNPs of DNA repair genes (OR, 3.01-4.08). SNPs of TGFβ1 were associated with osteoradionecrosis (OR, 4.2) and subcutaneous fibrosis. Genetic association studies in HN radiotoxicity currently provide hypothesis-generating findings that require validation in larger studies. Future studies must incorporate critical methodological issues and technological improvements, including using a genome-wide approach. Headway is possible through case-pooling of existing clinical trial data which could create a larger sample size of well-characterized treatment and endpoints. Also, on-going HN cancer clinical trials should consider extending their toxicity evaluation to include genetic association studies.

Identifying pain-related concerns in routine follow-up clinics following oral and oropharyngeal cancer

AIMnTo describe clinical characteristics of head and neck cancer (HNC) patients with pain and those wishing to discuss pain concerns during consultation.nnnMETHODSnCross-sectional, questionnaire study using University of Washington Quality of Life, version 4 (UW-QOL) and the Patients Concerns Inventory (PCI) in disease-free, post-treatment HNC cohort. Significant pain on UW-QOL and indicating Pain in head and neck and Pain elsewhere on PCI.nnnRESULTSnOne hundred and seventy-seven patients completed UW-QOL and PCI. The prevalence of self-reported pain issues was 38% (67/177) comprising 25% (44/177) with significant problems despite medications and 13% (23/177) with lesser or no problems but wishing to discuss pain. Patients aged under 65 years and patients having treatment involving radiotherapy were more likely to have pain issues. Just over half, 55% (24/44) of patients with significant pain did not express a need to discuss this. Those with significant pain or others wanting to discuss pain in clinic had greater problems in physical and social-emotional functioning, reported suboptimal QOL, and also had more additional PCI items to discuss in clinic compared to those without significant pain and not wishing to discuss pain.nnnCONCLUSIONnSignificant HNC-related pain is prevalent in the disease-free, posttreatment cohort. Onward referral to a specialist pain team may be beneficial. The UW-QOL and PCI package is a valuable tool that may routinely screen for significant pain in outpatient clinics.

The Patients Concerns Inventory in head and neck cancer: comparison between self-completed paper and touch screen versions in the clinic setting

BACKGROUNDnThe Patients Concerns Inventory (PCI) is a practical tool for patients to highlight their concerns and needs for discussion in consultations.nnnOBJECTIVEnTo use paper and touch-screen technology (TST) versions of the PCI, to see if there were differences in issues raised by patients before consultation and in issues discussed during consultation.nnnMETHODSnTwo consultants participated. Also 105 of their post-operative head and neck cancer patients in 122 consultations completed paper or TST versions of the PCI before consultation, April 2010 to April 2012.nnnRESULTSnThere were no statistically significant differences between paper and TST in how many PCI concerns were selected by patients or discussed in consultation, nor in length of consultation. Fear of recurrence, chewing/eating, dental health, swallowing, salivation, head & neck pain, speech and sleeping issues were common concerns across both paper and TST. Fewer than 10% of patients encountered any problems when completing either form of PCI. Interestingly, the two consultants used the PCI differently, reflected in different levels of agreement between items highlighted on the PCI and items subsequently discussed - κappa-coefficients of agreement were 0.68 for the paper and 0.66 for the TST version of the PCI (consultant A) and 0.55 for the paper and 0.32 for the TST version of the PCI (consultant B).nnnCONCLUSIONSnThis study found that the paper version of the PCI was an acceptable alternative to the TST version.

Screening for distress using the distress thermometer and the University of Washington Quality of Life in post-treatment head and neck cancer survivors

The primary aim was to determine the efficacy of the Distress Thermometer (DT) in screening for anxiety and mood problems against the University of Washington Quality of Life, version 4 (UWQOL). Secondary aims were to evaluate the association between demographic, clinical and health-related QOL variables with significant distress. Two hundred and sixty one disease-free HNC ambulatory patients attending routine follow-up clinics were prospectively recruited. Both DT and UWQOL were completed pre-consultation. Receiver operating characteristic (ROC) curve analyses of DT score for anxiety dysfunction yielded an area under the curve (AUC) of 0.877, with a sensitivity of 84% (43/51) and specificity of 76% (159/210) for a DT cut-off of ≥4; with a corresponding AUC of 0.825 for mood with sensitivity 78% (28/36) and specificity 71% (159/225). Treatment with radiotherapy and a longer consultation time were associated with significant distress (DTu2009≥4). Significant distress was also reported in two third of those reporting less than “Good” overall QOL. Distress levels were particularly associated with poor Social–Emotional function, more so than the association seen with poor physical function. DT is a reasonable screening tool for distress in the HNC population. The DT cut-off score ≥4 was effective in identifying those with significant distress. Significant distress is associated in survivors with poor health-related quality of life, those who received radiotherapy and patients who have longer consultation times in clinic.

Using the patients concerns inventory for distress screening in post-treatment head and neck cancer survivors

PURPOSEnCancer patients can experience significant distress during their cancer trajectory, which impacts upon clinical outcomes and quality of life. Screening for distress using holistic assessments can help identify and address unmet concerns/needs. The purpose of this study was to evaluate the relationship between concerns and distress, and the impact of distress on clinic outcomes in post-treatment head and neck cancer patients.nnnMETHODSn170 patients attending routine follow-up clinics were prospectively recruited. All patients completed the Patient Concerns Inventory (PCI) and the Distress thermometer (DT) at preconsultation.nnnRESULTSnThe rate of significant distress (i.e. DT cut-off score ≥4) was 36% (62/170). Significantly distressed patients selected more items overall than patients without distress (mean, median (QR) of 5.40, 5 (2-8) vs 2.61, 2 (0-4), pxa0<xa00.001). Significant distress was most strongly associated with Physical and Functional well-being (pxa0<xa00.001) and Psychological and Emotional well-being domains (pxa0=xa00.001). On balance, very little difference was noted between cut-off points of either ≥4 or ≥5 PCI items of concern selected. Both cut-off points demonstrated an acceptable level of sensitivity, specificity and predictive values for significant distress. Consultations were longer with increasing numbers of concerns.nnnCONCLUSIONSnJust over one-third of patients are significantly distressed. They were more likely to express a higher number of concerns. A cutoff score ≥4 or ≥5 PCI items selected can identify those at risk of significant distress. Concerns causing significant distress were related to emotional/psychological issues and physical function.