Patients concerns inventory highlights perceived needs and concerns in head and neck cancer survivors and its impact on health-related quality of life

Ghazali, Naseem; Roe, Brenda; Lowe, Derek; Rogers, Simon N.

doi:10.1016/j.bjoms.2015.01.022

Cited by 29 publications

(28 citation statements)

References 24 publications

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“…Patients indicated that they were reluctant to discuss emotions with a doctor or nurse. This reluctance is consistent with previous studies that showed that patients more often select medical topics from preparation tools than psychosocial and practical topics (Ghazali et al, ; Rogers, Audisio, & Lowe, ). This result may also explain the lack of effects of (the use of) concern lists on the discussion of concerns during consultations (Farrell et al, ; Hill et al, ) or why concerns in general are discussed to a lesser extent in consultations than information needs (Jansen et al, ).…”

Section: Discussionsupporting

confidence: 90%

“…We also examined whether the intervention content was best delivered via interpersonal or mediated communication. Many interventions to facilitate concern expression are delivered via mediated communication, such as booklets (e.g., Hill et al, ), websites (e.g., Tuinman, Gazendam‐Donofrio, & Hoekstra‐Weebers, ) and apps (e.g., Ghazali et al, ). However, the patients in our study most frequently mentioned the need for direct or mediated interpersonal communication (i.e., the possibility of interacting with another person online).…”

Section: Discussionmentioning

confidence: 99%

“…To tackle these problems, interventions for providers were developed, such as communication skills training to elicit and address patients' concerns (e.g., Butow et al, ; Zimmermann, Piccolo, & Finset, ). Patient interventions focus on concern lists that may be used as an aid before a consultation (e.g., Ghazali, Roe, Lowe, & Rogers, ; Hill et al, ). The effects of provider and patient interventions vary and are inconclusive.…”

Section: Introductionmentioning

confidence: 99%

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Cancer patients' needs for support in expressing instrumental concerns and emotions

et al. 2019

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Introduction The aim of our study was to provide an overview of intervention guidelines on how to address patients' practical needs for support in expressing instrumental concerns and emotions regarding medical, psychosocial and practical topics. Methods Six focus groups of cancer patients and survivors (N = 39) were organised. An interview guide was created that consisted of three topics: (a) concerns, (b) needs for support, and (c) a Concern Prompt List. Using the framework method, the transcripts were coded and analysed in Atlas T.I. Results Patients prefer to receive practical and emotional support, help with preparation, prompts/cues, instructions on how to perform the behaviour (i.e., express their concerns or emotions), feedback, a different structure for the consultation and tailoring. Most of these techniques should preferably be delivered via interpersonal communication. Needs sometimes differ for instrumental concerns and emotions. Only some needs for support were exclusively related to instrumental concerns or emotions. The typical needs for support were not solely linked to the medical, psychosocial and practical topics. Conclusion Different needs to express instrumental concerns and emotions throughout the disease trajectory are categorised. These needs provide input for developing interventions to support concern expression.

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Section: Discussionsupporting

confidence: 90%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Cancer patients' needs for support in expressing instrumental concerns and emotions

et al. 2019

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“…3 45 It has also been tested for content, face, and convergent validity. 45 When mapped against our conceptual 16 Flexen et al, 17 Wells et al, 10 Ghazali et al, 18 Alt-Epping et al, 28 Manne et al, 29 Henry et al, 30 Chen et al, 31 Butow et al, 32 Boyes et al, 33 So et al, 34 framework, SUNS had 58% of content relevant to HNC, failing to address concerns such as physical needs and symptom control, activities of daily living, dental, nutritional, and sexual needs.…”

Section: Survivors Unmet Needs Survey (Suns)mentioning

confidence: 99%

Content comparison of unmet needs self‐report measures used in patients with head and neck cancer: A systematic review

et al. 2019

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Objective Morbidity from head and neck cancers (HNCs) and their treatment are significant, given their proximity to anatomical sites impacting facial appearance and function. Assessing the needs of HNC patients throughout their cancer journey is critical to informing quality care and improving quality of life. We aimed to identify available unmet needs measures in the HNC setting and appraise their content and psychometric properties. Methods We conducted a systematic search of five electronic databases (July 2007‐July 2019) to identify studies of unmet needs in patients with HNC. In addition, three web‐based patient‐reported outcome measures (PROMs) databases were searched for unmet needs measures. Citations were screened for eligibility and identified measures reviewed for content coverage and psychometric properties. From identified measures and literature, a conceptual framework with 12 clinically relevant aspects of unmet needs was developed and used to assess the conceptual coverage of available unmet needs measures. Results Literature search identified 273 records of which 28 studies assessing unmet needs in HNC cancer met eligibility criteria. Seven unmet needs measures were identified from retrieved studies and seven additional measures from PROM databases. Thus, 14 measures in total were reviewed. Content mapping revealed that three measures demonstrated excellent content validity (greater than 80% conceptual coverage): Patient Concerns Inventory (PCI), Needs Assessment for Advanced Cancer Patients (NA‐ACP), and James Supportive Care Screening (JSCS). Conclusion We recommend PCI be used to measure unmet needs in the HNC setting considering the importance of content validity over quantitative psychometric properties.

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“…Previous studies have found that use of the PCI is feasible with elderly patients and those who have not achieved a high level of education [12, 13], and one study has looked at differences in PCI responses by age group [14]; however, to date, there have not been any studies which have examined how PCI responses might differ by patient’s socioeconomic status. Such a study may contribute to our understanding of whether there are differences in how patients across the socioeconomic gradient use the PCI.…”

Section: Introductionmentioning

confidence: 99%

Is social inequality related to different patient concerns in routine oral cancer follow-up clinics?

Allen

Lowe

Harris

et al. 2016

Eur Arch Otorhinolaryngol

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Oral cancer has a higher incidence in the lower social strata, and these patients are less likely to engage in supportive interventions and report a poorer quality of life (QoL). The aim of this paper is to compare the Patient Concerns Inventory (PCI) responses across social groups attending routine oral cancer follow-up clinics with particular focus on the deprivation lower quartile. The PCI package is completed by patients as part of their routine review consultation with SNR. Patients were those diagnosed between 2008 and 2012. Deprivation was stratified using the IMD 2010 from postcode. Of the 106 eligible patients, 85 % used the PCI. Just over half (54 %) were living in the most deprived quartile, with two-thirds (68 %) of males in the most deprived quartile, compared with 35 % of females (p = 0.004). In regard to number and type of PCI items selected by patients at their first PCI clinic, there were no notable differences in respect of IMD classification. The two commonest concerns were fear of recurrence (43 %) and sore mouth (43 %). The most deprived quartile reported significant problems in regard to mood (p = 0.004) and recreation (p = 0.02), and a non-significant trend (36 vs 18 %, p = 0.09) in stating their overall QoL as being less than good. It is possible to identify the concerns of patients from lower socioeconomic strata as part of routine follow-up clinics. This allows for targeted multi-professional intervention and supports to improve the outcome in this hard to reach group.

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Patients concerns inventory highlights perceived needs and concerns in head and neck cancer survivors and its impact on health-related quality of life

Cited by 29 publications

References 24 publications

Cancer patients' needs for support in expressing instrumental concerns and emotions

Cancer patients' needs for support in expressing instrumental concerns and emotions

Content comparison of unmet needs self‐report measures used in patients with head and neck cancer: A systematic review

Is social inequality related to different patient concerns in routine oral cancer follow-up clinics?

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