Spremembe v zdravstvenem vedenju bolnikov po postavljeni diagnozi kožnega melanoma - Rogl Butina, Mirjam (2019)
Izhodišča: Melanom ostaja zaradi svoje sposobnosti agresivnega metastaziranja najnevarnejši rak kože. Največje breme obolevnosti še vedno nosi Evropa. Ocene IARC za leto 2018 kažejo, da je med 20 z melanomom najbolj obremenjenimi državami kar 16 evropskih Slovenija zaseda deseto mesto na svetu. Ker je za prognozo bolezni ključno, v katerem stadiju melanom odstranimo, je za zmanjševanje z melanomom povezane umrljivosti izjemnega pomena preventiva – v tem pogledu je sekundarna preventiva verjetno celo pomembnejša kot primarna. Zato je smiselno čim temeljiteje spoznati dejavnike, ki posameznika vodijo v varno obnašanje na soncu, samopregledovanje in odločitev, da obišče zdravnika. Poznavanje in razumevanje sprememb v zdravstvenem vedenju, ki se pojavijo po soočenju z diagnozo melanoma bi lahko koristno vpletli v že obstoječe javnozdravstvene preventivne programe. Namen in hipotezi: Raziskavo sem oblikovala z namenom, da pridobim vpogled v zdravstveno vedenje slovenskih bolnikov v povezavi z diagnozo melanoma kože in opredelim dejavnike zdravstvenega vedenja, ki bi omogočili zgodnje diagnosticiranje melanoma. V povezavi s tem sem se odločila raziskati čas pred pregledom, tekom katerega je bil postavljen sum na melanom v prvi vrsti opredeliti, zakaj so se odločili za pregled, ki je pripeljal do diagnoze melanoma in ugotoviti ali so bolniki po seznanitvi z diagnozo spremenili svoje zdravstveno vedenje in kateri dejavniki so ključni za spremembe. Oblikovala sem dve hipotezi: (1) na bolnikovo odločitev za pregled pigmentnih lezij najpogosteje vplivata dva dejavnika: (i) spoznanje, da je možen razvoj melanoma tudi pri njem (bolniku) samem in (ii) s tem povezan občutek ogroženosti v eksistenčnem smislu (2) Po diagnozi melanoma so bolniki pomembno izboljšali preventivno zdravstveno vedenje, vendar v večji meri izogibanje obremenitvam z UV žarki kot samopregledovanje. Metode: Uporabila sem kombinirano metodo: najprej sem s kvalitativno raziskavo v smislu študije skupine primerov pridobila vpogled v izkušnje slovenskih bolnikov: njihov pogled na dogajanje, njihovo razmišljanje in čustvovanje med diagnostičnim postopkom in po prejetju diagnoze ter njihov odziv na diagnozo melanoma kože. Vključila sem deset bolnikov zasebne dermatološke zdravstvene ustanove s koncesijo v Ljubljani, vzorčenje je bilo namensko in paralelno. Drugi del je oblikovan kot presečno pregledna (epidemiološka) raziskava, temelječa na strukturiranem vprašalniku. Del vprašanj je soroden vprašanjem v že objavljenih podobnih raziskavah, del pa oblikovan glede na izsledke kvalitativne študije. Njen cilj je bil statistično ovrednotiti obseg sprememb v zdravstvenem vedenju in zaznati dejavnike, ki spremembe sprožijo. K raziskavi sem povabila 150 bolnikov treh ustanov v Ljubljani: zasebne dermatološke zdravstvene ustanove s koncesijo, Dermatovenerološke klinike ter Onkološkega inštituta in sicer iz vsake ustanove po 50 bolnikov. Rezultati: Podatke, ki sem jih pridobila v kvalitativnem delu, je kvantitativni del presenetljivo dosledno potrdil. Bolniki najpogosteje pridejo na pregled zaradi spremembe/znamenja, ki jih skrbi – bodisi, da ga opazijo sami ali jih opozorijo njihovi najbližji. Diagnoza melanoma kože je za bolnike pretežno stresna, kar 63,1% bolnikov poroča o močni vznemirjenosti zaradi diagnoze. Z njo se spopadajo predvsem s krepitvijo psihične stabilnosti: največkrat omenjajo pogovor (83,9%) in telesno aktivnost (58,7%), 23,1% bolnikov omenja tudi spremembo prehrane. Presenetljivo redko so se oprli na strokovno pomoč psihiatra ali psihoterapevta (le 2,1%). Bolniki po pridobljeni diagnozi melanoma kože pomembno izboljšajo preventivno zdravstveno vedenje, napredek v samopregledovanju je pokazalo 68,1% , napredek v zaščiti pred soncem pa 91,5% bolnikov. Potem, ko jim je bil diagnosticiran melanom, so statistično pomembno (p < 0,01) spremenili pogostost pregledovanja kože, pogosteje preverijo tudi očem težje dostopne predele (npr. med prsti nog, na genitalijah) in pogosteje jim pri pregledu pomagajo druge osebe. Za uporabo slikovnega materiala ob pregledu se odločajo relativno redko, tako pred kot po diagnozi melanoma. Še boljši so rezultati glede varnega obnašanja na soncu, kjer je očitno statistično pomembno izboljšanje na vseh področjih (p < 0,01): pri uporabi višjih zaščitnih faktorjev, nošnji očal, pokrival, oblačil z dolgimi rokavi in hlačnicami ter umiku v gosto senco ob urah močne obremenitve z UV sevanjem. Z logistično regresijo sem iskala dejavnike, ki pomembno vplivajo na napredek pri samopregledovanju. Analiza po posameznih dejavnikih je izpostavila dva, a oba v negativno smer: nižje obete za napredek imajo bolniki z melanomom stadija 1 in bolniki, ki so se že pred diagnozo samopregledovali. Pri kontroli na vse dejavnike v modelu pa imajo višje obete za napredovanje ženske, nižje pa ponovno bolniki z stadijem 1 in bolniki , ki so se pregledovali že pred diagnozo. V kvalitativnem delu je interpretacija izjav glede zdravnikov družinske medicine težka, njihova vloga ostaja skoraj sporna. V kvantitativnem delu se je izkazalo, da so daleč najpomembnejši vir informacij o bolezni še vedno zdravniki, a predvsem dermatologi in onkologi, manj kot petina bolnikov je omenila zdravnike splošne/družinske medicine. Ker so intervjuvanci v kvalitativnem delu izrazito izpostavili skrb za sočloveka, sem o tem povprašala tudi v kvantitativnem delu. Rezultati so bili izjemni – kar 92% bolnikov osebe v svoji okolici osvešča glede melanoma. V nasprotju s tem pa pri skrbi zase niso osveščeni, kot bi pričakovali: le dobra tretjina bolnikov si vsaj občasno preveri moda ali dojke. Zaključek: Če upoštevamo podatke iz časa pred diagnozo melanoma, kot podatke, ki veljajo za splošno populacijo, je preventivno zdravstveno vedenje glede melanoma kože, zlasti v smislu primarne preventive, v Sloveniji zadovoljivo. Po prejeti diagnozi melanoma se tako primarno, kot sekundarno preventivno vedenje močno izboljšata. Bolniki praktično optimizirajo zaščito pred soncem sicer pomembno izboljšajo tudi samopregledovanje, a bi se to področje nedvomno še dalo izpopolniti. Skušala sem opredeliti dejavnike, na katere bi se bilo smiselno opreti pri eventualnem preoblikovanju preventivnih sporočil, a razen ženskega spola pri nobenem od spremljanih dejavnikov nisem zaznala pomembnega vpliva na pričakovano izboljšanje samopregledovanja. V nasprotju s tem pa izstopata dva dejavnika, ki napovedujeta poslabšanje na področju samopregledovanja: bolniki z melanomom stadija 1 in bolniki, ki so se že pred diagnozo primerno samopregledovali. &#8195 Background: Cutaneous melanoma is one of the most common malignancies in the world. Given the possibility of aggressive metastases, it is the most dangerous form of skin cancer. Europe endures the most of melanoma: in IARC estimations for 2018 are among 20 countries, most heavily burdened with melanoma as many as 16 European countries, Slovenia occupies the tenth place in the world. The stage in which melanoma is detected and removed is the most important factor for the prognosis of the disease and survival. Therefore, for the reduction of melanoma-rated mortality prevention remains the key factor on primary and probably even more importantly on secondary level. Consequently, it is crucial to recognize those factors in health behaviour that lead a person to safe behaviour in the sun, self-examination and the decision to visit a doctor. Knowledge of changes in health behaviour that occur after diagnosis of cutaneous melanoma could be usefully integrated in present preventive health campaigns. Aim and hypotheses: I designed the research in order to gain insight into the health behaviour of Slovene patients in connection with the diagnosis of cutaneous melanoma and to detect those factors of health behaviour that would enable people to earlier diagnosis of melanoma. In connection with this, I decided to investigate the time before the medical check-up during which melanoma was suspected - why a person decided to visit a physician - and to determine whether patients changed their health behaviour after diagnosis. Moreover, if they did, which factors were crucial for change? I have formed two hypotheses: (1) the patient's decision to check up pigmentary lesions is most often affected by two factors: (i) the recognition that melanoma may also develop in her/his body and (ii) a related feeling of endangerment in existential sense (2) After diagnosis of melanoma, patients significantly improve preventive health behaviour, but to a greater extent avoiding UV rays than self-examination Methods: I conducted a combined research. First, a qualitative study focusing on the patients' view to gain an insight into the experience of Slovenian patients: their view of the events, their thoughts and feelings during the diagnostic procedure and after receiving the diagnosis and their response to the diagnosis of cutaneous melanoma. Regarding the purpose of research, we decided on the approach of the collective case report. Ten patients from a private dermatological outpatient clinic with a concession in Ljubljana were enrolled, sampling was purposeful and parallel. The second part is designed as a cross-sectional (epidemiological) survey based on a structured questionnaire. Part of the questions is related to the issues raised in similar studies, and partly they are shaped according to the data from the qualitative study. Its aim is to evaluate statistically the extent of changes in health behaviour and to detect factors that trigger the changes. 150 patients from three institutions were invited: from a private dermatological outpatient clinic with concession, from Department of Dermatovenereology, University Medical Centre Ljubljana and from the Institute of Oncology in Ljubljana - 50 patients from each institution. Results: The data I obtained in the qualitative part was consistently confirmed by the quantitative study results. Patients most often decided to visit a physician because of skin lesion changing – they noticed the change themselves or a family member or a friend warned them. Diagnosis of melanoma is predominantly stressful for patients, with 63.1% declaring severe agitation due to diagnosis. Most often reported mechanism of coping with stress is strengthening of psychic stability: patients very often mention conversation (83.9%) and physical activity (58.7%). A good fifth of patients also decides for a change in diet. Surprisingly rarely, they are receiving professional help of a psychiatrist or psychotherapist (only 2.1%). After being diagnosed with cutaneous melanoma, patients have significantly improved preventive health behaviour: 68.1% have shown improvement in self-examination and 91.5% of patients upgraded safe sun behaviour. Improvement in the frequency of skin examination is statistically significant (p<0,01), the same goes for the examination of poorly visible areas (between the toes, genitals) and obtaining help in examination. However, the use of melanoma images remains scarce. Even better are results regarding safe sun behaviour: statistically significant improvement is recorded in all areas: using higher UV protection filters, wearing sunglasses, headgear, long sleeves and trousers and especially in shifting to dense shadow during hours of heavy UV radiation. With logistic regression tests, I was looking for factors that have significant impact on progress in self-examination. The analysis by individual factors highlighted two factors, but both in a negative direction: patients with stage 1 melanoma and patients who had undergone self-examination even prior to diagnosis had lower prospects for progress. In controlling for all the factors in the model, women have higher prospects for progress, while patients with stage 1 and those who self examined themselves prior to melanoma again had lower prospects for progress. Interpretation of statements regarding family doctors, which emerged during the interviews in qualitative research, is difficult. Their role appears almost controversial. In the quantitative part of study by far the most important source of information on the disease are physicians, but predominantly dermatologists and oncologists less than 20% of patients mention family doctors. As the interviewees in qualitative work pointed out the concern for fellow human beings, we asked about this in quantitative part. The results are exceptional – 92% of the patients raise awareness about melanoma among their family members and friends. However, when asked about preventive health behaviour regarding other frequent cancers, they are not as concerned as one would expect – only a third of patients are checking their breasts or testicles at least occasionally. Conclusion: Considering data from the period before the illness as data from general population, and comparing it to the data from literature, preventive health behaviour in relation to melanoma is satisfactory in Slovenia. Moreover, it improves significantly after diagnosis of cutaneous melanoma. Patients practically optimize safe sun behaviour and substantially enhance skin self-examination - however in the latter there is room for improvement. I was looking for factors, with significant impact on the improvement in skin self-examination. The only factor with positive influence on expected improvement was female gender. On the other side, there are two factors that have negative impact on skin self-examination: patients with melanoma stage 1 and patients who have adequately self-examined themselves already before their melanoma.