In the search of databases, at first 1056 articles were retrieved, which after removing 963 duplicate and unrelated articles, 61 articles were evaluated based on inclusion criteria (Flowchart).
Studies were conducted in the United States (N = 5), Europe (N = 4), Asia (N = 4), and published between 2004–2021. The studies were mostly qualitative (N = 9), the study was quantitative (N = 3), and one type of study was unclear. Most qualitative studies collected data using individual interviews (N = 7), two qualitative studies, narratives of HPV patients from a website of patient experiences and questions. The characteristics of the participant and the study are shown in the table (Table 1).
The results of the overall quality evaluation of these articles showed that 8 articles were of good quality, 2 were of average quality and one was of poor quality. There is not enough information about Friedman AL etal and Garland SM articles to evaluate the quality, but since these studies were valuable, they were included in the study according to the opinion of the research team.
The results of the article evaluation are divided into four areas of the checklist, the total score of each article, and article quality in (Tables 2 and 3).
Summary of the needs presented by HPV women in qualitative studies including:
People with the virus cognition about HPV and cervical cancer, but did not have the necessary knowledge and awareness about it (26). They were confused about the nature of the disease, its severity, transmission, types, treatment, and instructions for the HPV, and needed to have complete information (27). Therefore, it is necessary to help patients understand the results of their test and their importance. Do not experience unnecessary fear, anxiety, or stigma and seek follow-up and recommendations to meet the patient's needs.
Signs, Symptoms, Transmitted, Cause, Consequences of HPV
People with the cause of HPV and how it is transmitted, the signs and symptoms of HPV infection and cervical cancer, how to get screened for cervical cancer, the consequences of the virus and its effects (for example, does the virus always cause cervical cancer?), Timeline (for example, how long does HPV cause cervical cancer?), Control and treatment (can it be prevented?), Information on how long the infection stays in the body, And does it lead to cancer? They needed to have complete information because they had stated that it would reduce their anxiety (25, 28–30).
HPV and sexual partner
Women with HPV needed counseling on how to communicate and deal with a sexual partner. Because some women expressed concern about their husbands' infidelity and a lack of trust was expressed between the couple (31).
When I got HPV, How do I tell my partner what to say? What effect does HPV have on sexual life? Because sometimes these issues lead to uncertainty and stress and in severe cases lead to the breakdown of relationships (28).
The most common question asked by women with HPV was: which sexual partner (active or former) did the infection come from? Did my partner get it from a previous relationship or did he or she betray me? When HPV is diagnosed in a couple, what are the consequences for the spouse and sexual partner? Will her sexual partner get it too? Should her partner test and follow up? When a couple is infected with HPV and is being treated, will they get the virus again from their partner? Will they constantly infect each other? Will they use a condom? Can I have sex? Can a person get HPV orally or by hand? (32, 33).
Seeking needed information by women with HPV
Because many women with the condition felt that they did not have enough information about HPV, many sought more information, including the Internet (social media, blogs, and websites provided by labs and private professionals) (34). Their health care providers and other women living with HPV). They found finding information reliable and up-to-date challenging. Most women prefer the information provided by official websites. Women who were regular Internet users reported finding useful information (31). However, it was often not easy for them to interpret and determine the correctness or incorrectness of the material. Women reported that most cases of finding information about HPV, along with the effect of the virus on genital warts and other sexually transmitted diseases, in which risk factors such as having multiple sexual partners were highlighted, some women were very upset and experienced a sense of shame and embarrassment (35). Or, in many cases, this information was in addition to information related to uterine cancer, which led to fear, anxiety, and stress in them. It seems that the information that women are looking for and the way their doctor informs them can affect their psychological response to HPV infection and is one of the issues that is considered important in follow-up (36).
HPV and social consequences
Dysfunction or inability to perform daily activities, limitation in relationships with others, limitation of social activities, shock, insecurity, and fear of deformity of the limbs following the development of genital warts and its impact on quality of life were among the challenges (37). Women with HPV experienced it during the illness. Therefore, women with HPV need psychosocial care at different stages of the disease, so that non-fulfillment of psychosocial needs can complicate the course of treatment and recovery (38).
Reproductive health needs in women with HPV
Women with HPV raised some issues related to fertility, and the need for proper counseling on the impact of the virus on reproductive health was felt (34).
Many women reported seeking information about fertility and pregnancy from various sources. Many women seek information about the adverse effects of HPV on male fertility, the negative impact of HPV on female fertility, the effect of treatments and vaccinations on female fertility and its relationship to female fertility, maternal health threats during pregnancy, adverse pregnancy outcomes, fetal harm, Fear of having a newborn This fear was so great that some people who decided to become pregnant postponed their pregnancy program until the cytology results improved so that they could receive appropriate counseling during this time. Women also noted the association between genital HPV infection and various maternal-fetal variables and pregnancy complications such as miscarriage and preterm delivery Therefore, these women need to know what to do to protect their reproductive health and reduce its complications against infection (30).
Since genital warts can multiply during pregnancy, removing warts during pregnancy was one of the most important issues. Women with genital warts have revealed the need for information about the teratogenicity of some wart removal treatments. They were anxious about any threat it might pose to the fetus (37).
Information on contraception, fear of premature menopause, fear of cervical cancer, fear of hereditary cancer caused by HPV were other issues raised in this area (30).
To prevent unplanned pregnancies, women with HPV needed more information to choose the preferred method of contraception. Because long-term use of birth control pills increases the risk of cervical cancer for women with persistent HPV, they needed guidance in changing their method of contraception. Women sought information on the negative effects of combined oral contraceptive pills (COCs) and levonorgestrel (LNG) pills on their cellular changes (39).
HPV screening and cervical cancer and vaccinations
Another piece of information that infected women needed to know about was screening. They needed to know how helpful these screenings can be in diagnosing uterine cancer (37). These include: How is screening done? Is a Pap smear enough to diagnose? Can HPV be diagnosed before cancer develops? In addition to annual checkups, what type of checkups are started at what intervals and at what age? What does the [HPV] test include? Can I get an HPV test from a doctor? How long does it take to determine the result of an HPV test? What is the difference between an HPV test and a Pap smear?(28)
The women also asked for information about the effect of the vaccine, side effects, long-term effects, mechanism of action of the vaccine, number of doses received, and the age range for vaccination (29).
SungJong Lee, et al. In their quantitative study showed 10 categories for topics and sample questions with different topics. Of the 3,062 people who visited the HPV website, 2,330 asked general questions and 732 asked private questions. The type and frequency of public and private questions showed a statistical difference between the two groups (p < 0.001).
From 2004 to 2011 the most common questions, respectively: a. Treatment of HPV and cervical dysplasia (37.8) 1156, b. How HPV transmission (22.3) 684, c. HPV regression (15.7) 481, d. Genital warts (5.7) 174, e. Risk factors for cervical cancer (4.8) 147, f. HPV vaccination 116 (8.3), g. Prevention of HPV 90 (9.2), h. Vaginal discharge (2.8) 86, i. HPV and pregnancy (2.6) 81, j. Laryngeal cancer and HPV 47 (1.5) was (37).
Sandra Millon Underwood et al. showed that sexual behavior and chronic HPV infections are risk factors for cervical cancer. Sexual behavior and chronic HPV infections are risk factors for cervical cancer. When asked to describe their sexual activity, 76.8% (352) of women reported having had sexual activity in the past six months. Among them, 2.62 (219) reported, having a sexual partner, 15.6% (55) two sexual partners and 22.2% (78) three or more partners in the past six months. The most common questions included: cause of HPV, cause of cervical cancer, signs, and symptoms of HPV infection, signs and symptoms of cervical cancer, HPV and cervical cancer screening, HPV vaccine, HPV and cervical cancer risk management (28).
Kathrin Milbury, et,al in their study showed that 66% of patients were aware of their HPV status, but only 35 percent identified HPV as a possible cause of their cancer. Most patients disclosed their HPV status to their partner, 41% talked about transmitting the virus, and only 23% felt aware of the potential risks of transmission and precautions. 39% of their oncologists want to discuss more HPV issues, and 58% sought it from other sources. More than a third said they were interested in more information about HPV.
Women are interested in receiving any information. 18% want more information on how HPV causes cancer. 15% wanted information on HPV vaccination (especially whether vaccinating their children to prevent cancer), 10% wanted information on how to prevent transmission to their partner, and 10% wanted to know if there was any cure for Is there HPV or not? (33).