Prospective longitudinal study on fear of cancer recurrence in patients newly diagnosed with head and neck cancer:Course, trajectories, and associated factors

Background: This study assessed the course of fear of cancer recurrence (FCR) in patients newly diagnosed with head and neck cancer (HNC), identified FCR trajectories and factors associated with FCR trajectories. Methods: Six hundred and seventeen HNC patients from the NET-QUBIC cohort study completed the Cancer Worry Scale-6 at diagnosis, 3 and 6 months post-treatment. FCR trajectories were identified using Latent Class Growth Analysis. Associations were explored between FCR trajectories and baseline demographic and medical variables, coping and self-efficacy. Results: Overall, FCR decreased slightly between baseline and 3 months post-treatment and remained stable up to 6 months. Two FCR trajectories were identified: “high stable” (n = 125) and “low declining” (n = 492). Patients with high stable FCR were younger, reported more negative adjustment, passive coping, and reassuring thoughts, and less avoidance. Conclusions: The majority of HNC patients have low declining FCR after diagnosis, but one in five patients experience persistent high FCR up to 6 months post-treatment

Unmet needs of breast cancer survivors in family medicine: analysis of the predictive factors

Zaradi napredka pri odkrivanju raka in boljšega zdravljenju, narašča število oseb, ki bolezen preživijo, oziroma z boleznijo živijo. Preživetje prinaša tolažbo, a kljub temu se za nekatere borba tu ne ustavi. Kakovost življenja je lahko bistveno zmanjšana zaradi fizičnih, psihičnih in praktičnih težav, s katerimi se bolniki še vrsto let po končanem zdravljenju borijo. Raziskave poročajo, da imajo onkološki bolniki v primerjavi z zdravimi kontrolami več težav in da te lahko vztrajajo še nekaj mesecev ali let po koncu zdravljenja. Težave so multidimenzionalne in se najpogosteje nanašajo na različne zdravstvene težave (več vnetij in kroničnih bolezni, kognitivne težave, prezgodnja menopavza) na simptome depresije in tesnobnosti in druge čustvene motnje (strah pred ponovitvijo bolezni, slabša samopodoba), težave z zaposlitvijo in seksualnostjo. Primerjava onkoloških bolnikov po koncu zdravljenja z bolniki, ki so še v procesu zdravljenja, je pokazala, da se prvi srečujejo z drugačnimi potrebami in čeprav v očeh zdravstvene oskrbe niso več bolniki, imajo še vedno velika pričakovanja glede spremljanja bolezni in njenih posledic. Odsotnost (ponovne) diagnoze bolezni torej nujno ne pomeni, da bo imel onkološki bolnik enake potrebe glede zdravstvene oskrbe kot pred boleznijo. Obravnavanje potreb bolnikov, ki so preživeli raka, je pomembno, ker longitudinalne študije kažejo, da nezadovoljene potrebe vplivajo na slabšo kakovost življenja bolnikov, povečajo pogostost obiskov ambulant družinske medicine in, kar je najpomembneje, ne izginejo same od sebe, ampak povzročijo več nezadovoljenih potreb v prihodnosti. Žilavost (ang. resilience), ki je definirana kot proces in rezultat uspešnega prilagajanja težkim in zahtevnim življenjskim izkušnjam, lahko ublaži negativne učinke bolezni in zdravljenja ter pomaga razviti vedenja, ki spodbujajo zdravje. V osnutku Državnega programa obvladovanja raka (DPOR) za leto 2017-2021 omenjajo kot enega izmed prednostnih ciljev zagotavljanje celostne rehabilitacije (medicinske, psihološke, socialne in poklicne) od diagnoze dalje. Analiza položaja izvedena spomladi 2016 je pokazala, da je priložnost DPOR 2017-2021 sledenje in kakovostna obravnava po končanem zdravljenju na primarni ravni. Kot eno izmed nevarnosti pa omenjajo pomanjkanje smernic za onkološke bolnike. Vloga zdravnika družinske medicine po koncu zdravljenja v Sloveniji ni dobro opredeljena, ni sprejetih smernic, ki bi opredeljevale vlogo primarnega zdravstvenega varstva, izobraževanje v klinični onkologiji v času specializacije ni zadostno, komunikacija med zdravnikom in onkologom poteka predvsem preko napotitev, celoletna napotitev na onkologa zmanjšuje vlogo družinskega zdravnika, metoda usmerjanja pacintov na rehabilitacijo s primarne ravni ni optimalnaneustrezna pa je tudi vključitev ambulant družinske medicine v paliativno oskrbo. Kljub vsemu pa imajo zdravniki družinske medicine zaradi vseh informacij o bolniku, njegovi zgodovini, prisotnosti drugih bolezni, bolnikovem družinskem položaju ter njihovi celoviti in in stalni oskrbi bolniku veliko ponuditi. Pomanjkanje ustreznic smernic, kako nasloviti potrebe onkoloških bolnikov po koncu zdravljenja v družinski medicini, je problematično ne le zaradi povečanja števila preživelih onkoloških bolnikov, temveč tudi zaradi vedno bolj kronične narave bolezni, visoke razširjenosti komorbidnih bolezni in povezanih psihosocialnih težav. Ocenjevanje nezadovoljenih potreb je strategija, ki se osredotoča na odkrivanje bolnikovih nezadovoljenih potreb, ugotavljanje ali potrebujejo nadaljnjo podporo ter obseg podpore, ki jo potrebujejo. Ocena potreb je ali bi vsaj morala biti stalen procespriporočljivo je, da se izvaja na različnih fazah preživetja in se spremlja, da se ugotovi, kako se spreminja skozi čas. Do danes je bilo razvitih več instrumentov, ki jih je mogoče uporabiti za oceno nezadovoljenih potreb preživelih z rakom po zaključku njihovega zdravljenja. Lestvica o nezadovoljenih potrebah SUNS (ang. Survivor Unmet Needs Survey) ima glede na literaturo najmočnejše psihometrične lastnosti, lestvica CaSUN (ang. Cancer Survivors Unmet Needs scale) pa je najbolj celovita, saj obsega največje število področij, ki se tičejo potreb bolnikov po koncu zdravljenja (npr. praktične, fizične ali čustvene potrebe), zaradi česar smo se odločili lestvico CaSUN vključiti v naš nabor merskih instrumentov. Namen doktorskega dela je bilo ugotoviti pojavnost nezadovoljenih potreb bolnic z rakom dojke v Sloveniji in preučiti kateri dejavniki, povezani z bolnikom in zdravljenjem, so močneje povezani z višjimi stopnjami nezadovoljenih potreb na vzorcu slovenskih preživelih z rakom dojke. Pričujoče delo je sestavljeno iz treh delov in petih poglavij. Teme opisujejo a) postopek pregleda literature, b) pridobivanje ustreznih merskih instrumentov in c) ocenjevanje nezadovoljenih potreb v izbrani populaciji. Poglavja predstavljajo objavljeno delo, ki je bilo opravljeno za izpolnitev določenega namena. Pred zbiranjem podatkov so bile oblikovane hipoteze, s katerimi smo preverjali veljavnost in zanesljivost izbranih merskih inštrumentov (H1. Slovenska različica CaSUN je veljavno in zanesljivo orodjeH2. Slovenska različica RS-14 je veljavno in zanesljivo orodje), pojavnost nezadovoljenih potreb pri slovenskih bolnicah z rakom dojke (H3. Vsaj 30 odstotkov preživelih z rakom dojke poroča o vsaj eni neizpolnjeni potrebi) in možnost izdelave multivariatnega modela, s katerim bi prepoznali lastnosti, ki se kažejo kot bolj povezane z nezadovoljenimi potrebami onkoloških bolnic z rakom dojke (H4. Multivariatni model identificira potencialne dejavnike, ki napovedujejo neizpolnjene potrebe pri preživelih z rakom dojke). V uvodu najprej pregledamo in opredelimo faze preživetja raka (ang. cancer survivorship) in nezadovoljene potrebe znotraj družinske medicine. V nadaljujevanju povežemo nezadovoljene potrebe z nekaterimi ključnimi pojmi, kot so strah pred ponovitvijo bolezni (ang. fear of cancer recurrence) in žilavost. Nazadnje pa še pregledamo trenutno razpoložljive intervence za naslavljanje nezadovoljenih potreb in njihove rezultate. V 1. poglavju smo pregledali že obstoječo literature o nezadovoljenih potrebah onkoloških bolnikov po koncu zdravljenja. V pregled smo vključili šestindvajset študij. Večjo pojavnost vsaj ene nezadovoljene potrebe smo opazili pri bolnicah, pri katerih je od zdravljenja minilo manj časa in pri ženskah, katere so prebolele raka dojke. Najpogosteje poročane nezadovoljene potrebe so bile strah pred ponovitvijo raka in nedostopnost posodobljenih informacij. Mlajša starost bolnikov, večja tesnoba in slabša kakovost življenja, so bile spremenljivke povezane z višjo ravnjo nezadovoljenih potreb. V vključene merske inštrumente, smo poleg socialne podpore, ki se kaže kot pomemben varovalni dejavnik pri boljšem mentalnem zdravju in kakovosti življenja, dodali še žilavost, saj je pogosto opisana kot relevanten koncept, še zlasti za tiste bolnike, ki so ravno končali zdravljenje in prehajajo v fazo podaljšanega preživetja (e.g. extended survivorship). V 2. poglavju zato najprej pregledamo že objavljene psihometrične študije o Lestvici za samooceno žilavosti (ang. 14-item Resilience ScaleRS-14), katero nato prevedemo in validiramo v 3. poglavju. V Sloveniji je področje potreb bolnikov z rakom slabo opisano. Obstaja nujna potreba po jezikovnem prevodu razpoložljivih instrumentov. Preden smo torej lahko ocenili nezadovoljene potrebe, smo morali prevesti in validirati ustrezne instrumente. V 3. poglavju in 4. poglavju smo prevedli in validirali lestvici CaSUN in RS-14 in s tem potrdili hipotezi H1 in H2. Faktorsko strukturo smo pregledali z eksploratorno analizo in potrdili s konfirmatorno analizo. Psihometrične lastnosti so bile ocenjene z notranjo konsistentnostjo, zanesljivostjo testa in ponovnega testiranja ter veljavnostjo konstrukta. Obe lestvici sta se izkazali kot veljavni in zanesljivi za ocenjevanje nezadovoljenih in zadovoljenih potreb ter skupno vrednostjo lestvice CaSUN, ter žilavosti slovenskih bolnikov z rakom po končanem zdravljenju. V 5. poglavju smo zbrali in analizirali podatke 430 bolnic z rakom dojke, ki so končale primarno zdravljenje, ocenili smo pojavnost in identificirali dejavnike, povezane z višjimi ravnmi nezadovoljenih potreb. V tej študiji smo ugotovili, da 67% preživelih poroča o vsaj eni srednje do visoko nezadovoljeni potrebi (in s tem potrdili hipotezo H3), vključno s pomanjkanjem dostopnega bolnišničnega parkirišča in strahom pred ponovitvijo bolezni. V študiji smo ugotovili, da so mlajše bolnice, katere imajo tri ali več sočasnih bolezni, nižjo kakovost življenja in nizke nivoje žilavosti, v multivariatnem regresijskem modelu povezane z višjimi nivoji nezadovoljenih potreb. S tem smo potrdili hipotezo H4. Doktorsko nalogo zaključimo s pregledom in splošno razpravo, v kateri smo rezultate študij primerjali z drugimi študijami in jih postavili v širšo perspektivo. Podali smo več priporočil za prihodnje raziskave, med drugimi spremljanje bolnic skozi daljše časovno obdobje, analiza grozdov (ang. cluster analysis), vključitvijo redkejših oblikov raka in simptomov, ki niso del standardiziranih instrumentov za merjenje nezadovoljenih potreb, a za bolnice zelo pomembni (npr. utrujenost, težave s spanjem, kognitivne težave). Zapisali smo tudi klinične implikacije za zdravstvene delavce, ki so vključeni v skrb za onkološke bolnike po koncu zdravljenja. Morda ena izmed najpomembnejših ugotovitev naše študije je identifikacija mlajših bolnic preživelih z rakom dojke, ki so imele višje nezadovoljene potrebe glede na skupni rezultat CaSUN in na dveh drugih domenah (celovita oskrba raka ter psihološka in čustvena podpora). Mlajše bolnice z rakom dojke imajo večjo potrebo po interakciji z drugimi bolnicami z rakom njihove starosti, ker se pogosto počutijo izolirane. Poleg tega se soočajo s številnimi izzivi, vključno s težavami s plodnostjo, povečanjem telesne teže, kronično utrujenostjo in kognitivnimi motnjami. Kljub potrebi, da se bolnice želijo med seboj povezati in bi si na ta način lahko med seboj povezale preko skupin za bolnice, pa so preliminarni podatki naše kvalitativne študije pokazali, da imajo bolnice močno potrebo po dostopnem zdravstvenem delavcu in da želijo skrbi in težave zaupati naslavljati znotraj zdravstvenega sistema. Potrebne so longitudinalne študije, da se ugotovi, kateri bolniki (a) imajo vztrajno nizke ravni nezadovoljenih potreb, b) imajo na začetku visoke ravni nezadovoljenih potreb, ki se sčasoma zmanjšajo, (b) imajo vztrajno in znatno visoke ravni nezadovoljenih potreb in (c) imajo na začetku nizke ravni nezadovoljenih potreb, ki se sčasoma poslabšajo. Na podlagi doktorskega dela zdravnikom družinske medicine priporočamo, da bodo pozorni na onkološke bolnike, ki so mlajši in imajo več sočasnih bolezni, saj je bilo ugotovljeno, da so te značilnosti bolnikov pomembno povezane z visokimi stopnjami nezadovoljenih potreb in kar je pomembno, to so spremenljivke, ki jih je mogoče odkriti brez dodatnega časa.Due to advances in cancer detection and better treatment, more and more patients are surviving cancer. While surviving cancer may be a comfort to some, others continue to struggle with physical, emotional and practical issues and struggle for years with late and long-term effects. Addressing the needs of cancer survivors is important because longitudinal studies show that unmet needs affect patients\u27 quality of life, increase the frequency of visits to health care facilities, and, most importantly, do not resolve themselves but cause more unmet needs in the future. By strengthening resilience, cancer survivors can mitigate the negative effects of the disease and treatment and develop health-promoting behaviours that enable them to positively integrate these changes into their lives. The aim of this dissertation was to obtain a Slovenian version of the 14-item Resilience Scale (RS -14) and the Cancer Survivors Unmet Needs (CaSUN) scale to determine the prevalence of unmet needs in breast cancer survivors after treatment and to identify sociodemographic, clinical, and psychosocial variables associated with high levels unmet needs. Besides general introduction and discussion, this dissertation consists of three parts and five chapters. The themes describe the process of reviewing the literature, obtaining validated measures, and assessing unmet needs in a selected population. The chapters present the published work that was conducted to fulfil the proposed purpose. Chapter 1 provided background information on the unmet needs of survivors after cancer treatment. Chapter 2 presented psychometric studies on the 14-item resilience scale (RS-14), which we further use in Chapter 3. In Slovenia, the topic of cancer survivors\u27 needs is poorly described. There is an urgent need for language translation of the available instruments. Thus, before we could assess unmet needs, we needed to translate and validate appropriate instruments. In Chapters 3 and Chapter 4, we translated and validated the CaSUN and RS-14 in a sample of participants without cancer and survivors of cancer. Factor structure was examined with exploratory analysis and confirmed with confirmatory analysis. Psychometric properties were assessed using internal consistency, test-retest reliability, and construct validity. Both measures were found to be valid and reliable measures for assessing unmet, met, and total needs, and resilience of Slovenian cancer survivors. In Chapter 5, we analysed data from 430 breast cancer survivors post primary treatment, assessed prevalence, and identified factors associated with high levels of unmet need. In this study, we found that 67% of survivors reported at least one unmet need, including lack of accessible hospital parking and concern about recurrence. Younger age, three or more comorbidities, lower quality of life, and low resilience were associated with high levels of unmet needs in the multivariate regression model. We ended this thesis with an overview and general discussion comparing the results of other studies and placing them in a broader perspective. Several recommendations for future research and clinical implications were made

Family history tools for primary care

Background: Many medical family history (FH) tools are available for various settings. Although FH tools can be a powerful health screening tool in primary care (PC), they are currently underused. Objectives: This review explores the FH tools currently available for PC and evaluates their clinical performance. Methods: Five databases were systematically searched until May 2021. Identified tools were evaluated on the following criteria: time-to-complete, integration with electronic health record (EMR) systems, patient administration, risk-assessment ability, evidence-based management recommendations, analytical and clinical validity and clinical utility. Results: We identified 26 PC FH tools. Analytical and clinical validity was poorly reported and agreement between FH and gold standard was commonly inadequately reported and assessed. Sensitivity was acceptablespecificity was found in half of the reviewed tools to be poor. Most reviewed tools showed a capacity to successfully identify individuals with increased risk of disease (6.2-84.6% of high and/or moderate or increased risk individuals). Conclusion: Despite the potential of FH tools to improve risk stratification of patients in PC, clinical performance of current tools remains limited as well as their integration in EMR systems. Twenty-one FH tools are designed to be self-administered by patients

The impact of psychological interventions with elements of mindfulness (PIM) on empathy, well-being, and reduction of burnout in physicians

Introduction: Physician’s burnout has been recognized as an increasing and significant work-related syndrome, described by the combination of emotional exhaustion (EE) and depersonalization (D), together with low personal accomplishment (PA). It has many negative consequences on personal, organizational, and patient care levels. This systematic review aimed to analyze research articles where psychological interventions with elements of mindfulness (PIMs) were used to support physicians in order to reduce burnout and foster empathy and well-being. Methods: Systematic searches were conducted in May 2019, within six electronic databases PubMed, EBSCOhost MEDLINE, PsycArticles, Cochrane Library, JSTOR, and Slovenian national library information system. Different combinations of boolean operators were used—mindfulness, empathy, medicine/family medicine/general practice/primary care, burnout, doctors/physicians, intervention, and support group. Additional articles were manually searched from the reference list of the included articles. Studies with other healthcare professionals (not physicians and residents) and/or medical students, and those where PIMs were applied for educational or patient’s treatment purposes were excluded. Results: Of 1194 studies identified, 786 screened and 139 assessed for eligibility, there were 18 studies included in this review. Regardless of a specific type of PIMs applied, results, in general, demonstrate a positive impact on empathy, well-being, and reduction in burnout in participating physicians. Compared with other recent systematic reviews, this is unique due to a broader selection of psychological interventions and emphasis on a sustained effect measurement. Conclusions: Given the pandemic of COVID-19, it is of utmost importance that this review includes also interventions based on modern information technologies (mobile apps) and can be used as an awareness-raising material for physicians providing information about feasible and easily accessible interventions for effective burnout prevention and/or reduction. Future research should upgrade self-reported data with objective psychological measures and address the question of which intervention offers more benefits to physicians

The safety of patient management in family medicine in Slovenia during Covid-19

Abstract Background During the Covid-19 pandemic, family medicine practices (FMPs) changed to improve safety against new coronavirus infections for both patients and employees. Protocols for treating patients with suspected Sars-Cov-2 infections were established to protect medical staf and other patients from being infected. However, these protocols also led to increased safety risks, such as delays in treating patients with other medical conditions. This exploratory study aimed to investigate safety risks in treating patients in FMPs during the Covid-19 pandemic and to suggest improvements to prevent Covid-19 in FMPs in Slovenia. Methods A cross-sectional study was rolled out in FMPs in Slovenia as part of the international Pricov-19 study. Data collection on safety management during the Covid-19 pandemic in FMPs in Slovenia took place from November 2020 until January 2021 using a self-administered online survey for FP working in Slovenia. A chi-square test, ANOVA, independent samples t-test or bivariate correlation test was performed to explore associations regarding the safety of patients’ management variables. Results From the 191 participating family physicians (FPs) (15.2% response rate), 54.8% reported having treated patients with fever (not Covid-19) late due to the new protocols at least once, and 54.8% reported patients with urgent conditions having been seen late at least once due to not coming. In the suburbs and rural environments FPs more often reported that at least once patient with a fever (not Covid-19) was seen late due to the protocol (p=0.017) and more often reported that at least once patient with an urgent condition was seen late due to not com‑ ing to their FP (p=0.017). The larger the practice, the more they reported that at least once a patient with fever (not Covid-19) was seen late due to the protocol (p=0.012) and the more they reported at least once a patient with an urgent condition was seen late due to not coming to their FP (p=0.012). Conclusion Covid-19 afected the safety of patient management in FMP in Slovenia. The most common prob‑ lem was foregone care. Therefor, protocols for chronic patient management in the event of epidemics need to be established

Marital status and survival in cancer patients: A systematic review and meta‐analysis

Abstract Background In recent years, authors have repeatedly reported on the significance of social support in cancer survival. Although overall the studies appear to be convincing, little is known about which types of social support promote better survival rates, and which subgroups of cancer patients are more susceptible to the benefits of it. The aim of this study was to identify, organize, and examine studies reporting on the significance of social support in cancer survival. Methods The PubMed, CINAHL and EBSCO databases were searched using the keywords social support/marital status, cancer, and survival/mortality. Where possible we used a meta‐analytical approach, specifically a random effect model, in order to combine the results of the hazard ratios in studies from which this information could be obtained. When interpreting clinical relevance, we used the number needed to treat (NNT). Results Better survival was observed in married patients when compared to unmarried (single, never‐married, divorced/separated, and widowed) in overall and cancer‐specific survival. Gender group differences showed that the association was statistically significant only in cancer‐specific survival when comparing divorced/separated male and female cancer patients (p < 0.001), thus confirming results from the previous meta‐analysis. Conclusions Being unmarried is associated with significantly worse overall and cancer‐specific survival. The most vulnerable group found in our study were divorced/separated men. The results of this review can motivate physicians, oncologists, and other healthcare professionals to be aware of the importance of patients' social support, especially in the identified sub‐group

Symptoms of Anxiety and Depression Among Slovenian Breast Cancer Survivors Post-Treatment During the COVID-19 Pandemic: A Cross-Sectional Study

Although anxiety and depression are important determinants of mental health, the literature in this area is sparse as most studies focus on the period during treatment. Mental health problems can affect cancer recovery as well as quality of life and survival. In this cross-sectional study, we investigated the prevalence of anxiety and depression in Slovenian cancer survivors after treatment and assessed the associated correlates during the COVID-19 pandemic

Table_1_Factors associated with a high level of unmet needs and their prevalence in the breast cancer survivors 1–5 years after post local treatment and (neo)adjuvant chemotherapy during the COVID-19: A cross-sectional study.docx

ObjectiveTo assess the prevalence of unmet needs in post-treatment breast cancer survivors and identify sociodemographic, clinical, and psychosocial variables associated with reported unmet needs during the COVID-19 pandemic.Materials and methodsIn this cross-sectional study, 430 post-treatment breast cancer survivors, ranging between 1 and 5 years after the procedure, completed the Cancer Survivors’ Unmet Needs (CaSUN) questionnaire from September 2021 and January 2022. The multivariate logistic analysis identified factors associated with at least one reported unmet need in the total CaSUN scale and specific domains.ResultsA total of 67% of survivors reported at least one unmet need. The most frequently reported unmet needs were the lack of accessible hospital parking (43%) and recurrence concerns (39.5%). The majority of reported unmet needs relate to comprehensive care (44%), followed by the psychological and emotional support domain (35.3%). Younger age (OR = 0.95, 95% CI = 0.92–0.99; p ConclusionA high prevalence found in our study could be attributed to the COVID-19 pandemic, where patients may have missed adequate follow-up care, although comparing to studies done in non-pandemic time is difficult. Family physicians should be more attentive toward younger cancer survivors and those with more comorbidities as both characteristics can be easily recognized in the family practice.</p

Prospective longitudinal study on fear of cancer recurrence in patients newly diagnosed with head and neck cancer: Course, trajectories, and associated factors

Background: This study assessed the course of fear of cancer recurrence (FCR) in patients newly diagnosed with head and neck cancer (HNC), identified FCR trajectories and factors associated with FCR trajectories. Methods: Six hundred and seventeen HNC patients from the NET-QUBIC cohort study completed the Cancer Worry Scale-6 at diagnosis, 3 and 6 months post-treatment. FCR trajectories were identified using Latent Class Growth Analysis. Associations were explored between FCR trajectories and baseline demographic and medical variables, coping and self-efficacy. Results: Overall, FCR decreased slightly between baseline and 3 months post-treatment and remained stable up to 6 months. Two FCR trajectories were identified: “high stable” (n = 125) and “low declining” (n = 492). Patients with high stable FCR were younger, reported more negative adjustment, passive coping, and reassuring thoughts, and less avoidance. Conclusions: The majority of HNC patients have low declining FCR after diagnosis, but one in five patients experience persistent high FCR up to 6 months post-treatment